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1
Mappings
0
Definitions
1
Inheritance
13
Pathophysiology
0
Histopathology
8
Phenotypes
26
Pathograph
1
Genes
4
Treatments
7
Subtypes
3
Differentials
0
Datasets
0
Trials
0
Models
2
Deep Research
🔗

Mappings

MONDO
MONDO:0019448 benign adult familial myoclonic epilepsy
skos:closeMatch MONDO
MONDO provides the closest historical syndrome term, but this dismech entry is intentionally narrower and restricted to the established pentanucleotide repeat subgroup.
👪

Inheritance

1
Autosomal dominant HP:0000006
Repeat-positive FAME is inherited in an autosomal dominant pattern, and repeat instability contributes to genetic and clinical anticipation in many pedigrees.
Autosomal dominant inheritance
Show evidence (2 references)
PMID:40571639 SUPPORT Other
"Benign adult familial myoclonus epilepsy (BAFME) is an autosomal dominantly inherited disease characterized by infrequent seizures and tremorous myoclonus."
Supports autosomal dominant inheritance as the core inheritance pattern of the repeat-positive FAME syndrome.
PMID:33040085 SUPPORT Human Clinical
"Genetic and clinical anticipation was observed."
Supports clinically relevant anticipation in repeat-positive FAME pedigrees.

Subtypes

7
SAMD12 repeat form
SAMD12 link
Canonical repeat-positive FAME1 locus and the most common established disease form in East Asian pedigrees.
STARD7 repeat form
STARD7 link
Repeat-positive FAME2 locus within the same mechanistic family.
MARCHF6 repeat form
MARCHF6 link
Classical repeat-positive FAME3 locus; this subtype is limited to the epilepsy phenotype and excludes small-insertion MARCHF6 alleles associated with familial cortical myoclonus without seizures.
YEATS2 repeat form
YEATS2 link
Repeat-positive FAME4 locus within the shared TTTTA/TTTCA mechanism.
TNRC6A repeat form
TNRC6A link
Repeat-positive FAME6 locus discovered in families clinically similar to canonical BAFME/FAME.
RAPGEF2 repeat form
RAPGEF2 link
Repeat-positive FAME7 locus; kept distinct from the separate coding-variant RAPGEF2 neurodevelopmental disorder.
RAI1 repeat form
RAI1 link
Repeat-positive FAME8 locus first described in a Malian family, extending this repeat-expansion mechanism to an African pedigree.

Pathophysiology

13
SAMD12 locus-specific repeat expansion
The SAMD12 repeat-positive subtype is driven by a SAMD12 intronic TTTCA-containing pentanucleotide repeat expansion.
SAMD12 link
STARD7 locus-specific repeat expansion
The STARD7 repeat-positive subtype is driven by a STARD7 intronic TTTCA-containing pentanucleotide repeat expansion.
STARD7 link
MARCHF6 locus-specific repeat expansion
The MARCHF6 repeat-positive subtype is driven by a MARCHF6 intronic TTTCA-containing pentanucleotide repeat expansion.
MARCHF6 link
YEATS2 locus-specific repeat expansion
The YEATS2 repeat-positive subtype is driven by a YEATS2 intronic TTTCA-containing pentanucleotide repeat expansion.
YEATS2 link
TNRC6A locus-specific repeat expansion
The TNRC6A repeat-positive subtype is driven by a TNRC6A intronic TTTCA-containing pentanucleotide repeat expansion.
TNRC6A link
RAPGEF2 locus-specific repeat expansion
The RAPGEF2 repeat-positive subtype is driven by a RAPGEF2 intronic TTTCA-containing pentanucleotide repeat expansion.
RAPGEF2 link
RAI1 locus-specific repeat expansion
The RAI1 repeat-positive subtype is driven by a RAI1 intronic TTTCA-containing pentanucleotide repeat expansion.
RAI1 link
TTTCA-containing intronic pentanucleotide repeat expansion
The core molecular lesion is an intronic TTTTA expansion containing pathogenic TTTCA insertions in one of the established FAME loci: SAMD12, STARD7, MARCHF6, YEATS2, TNRC6A, RAPGEF2, or RAI1.
SAMD12 link STARD7 link MARCHF6 link YEATS2 link TNRC6A link RAPGEF2 link RAI1 link
Show evidence (2 references)
PMID:40200849 SUPPORT Human Clinical
"FAME is a rare autosomal dominant disorder caused by the same intronic TTTTA/TTTCA repeat expansion in seven distinct genes. TTTTA-only expansions are benign, whereas those containing TTTCA insertions are pathogenic."
Supports the shared mechanistic lesion across the currently established FAME loci.
PMID:37994247 SUPPORT Human Clinical
"We identified TTTTA repeat expansions and TTTCA repeat insertions in intron 4 of the RAI1 gene that co-segregated with disease status in this family."
Extends the same molecular mechanism to the seventh currently established locus and supports locus heterogeneity within a single repeat-driven disease unit.
UUUCA repeat RNA toxicity
The leading shared mechanism is toxicity from transcribed UUUCA repeat RNA with nuclear foci formation, rather than a simple consequence of altered host-gene dosage.
neuron link Purkinje cell link
Show evidence (2 references)
PMID:41850906 SUPPORT In Vitro
"First, (TTTCA)exp insertion neither altered SAMD12 expression nor translates into repeat peptides. Second, (UUUCA)exp RNA foci were detected in both the constructed cell line and iPSC-neurons, and presented toxicity effects."
Supports host-gene-independent RNA-foci toxicity while arguing against repeat peptide production in iPSC-neuron models.
PMID:37994247 SUPPORT Human Clinical
"CONCLUSIONS: These findings establish a new type of BAFME, BAFME8, in an African family and suggest that haploinsufficiency is unlikely to be the main pathomechanism of BAFME."
Supports a host-gene-independent disease mechanism and argues against simple haploinsufficiency as the common explanation.
NOVA2-mediated neuronal alternative splicing dysregulation
UUUCA repeat RNA interacts with NOVA2, disturbs its nuclear distribution, and disrupts neuronal alternative splicing in patient-derived neurons.
neuron link
NOVA2 link
RNA splicing link ↕ DYSREGULATED
Show evidence (2 references)
PMID:41850906 SUPPORT In Vitro
"Third, NOVA2, a neuron-specific splicing regulator, was identified as the key RNA-binding protein interacting with (UUUCA)exp RNA."
Identifies NOVA2 as the key RNA-binding protein linking UUUCA RNA foci to downstream neuronal dysfunction.
PMID:41850906 SUPPORT In Vitro
"Shared synaptic-related pathways of alternative splicing events were observed in both FCMTE1-iPSC-neurons and NOVA target genes."
Supports a downstream effect of the NOVA2 defect on synapse-related transcript programs.
Cerebellocortical circuit dysfunction
Repeat-positive FAME is not purely cortical; available human data support a combined cortex-cerebellum disorder in which cerebellar dysfunction may shape or amplify cortical hyperexcitability.
neuron link Purkinje cell link
chemical synaptic transmission link ↕ DYSREGULATED
cerebral cortex link cerebellum link
Show evidence (2 references)
PMID:37371086 SUPPORT Other
"Moreover, neuroimaging studies and postmortem autoptic studies indicate cerebellar alterations and abnormal functional connectivity between the cerebellum and cerebrum in FAME."
Supports a combined cerebellocortical network disorder with abnormal cerebellum-cerebrum connectivity.
PMID:40747611 SUPPORT Other
"Neuroimaging studies typically show mild cerebellar atrophy or nonspecific structural changes on magnetic resonance imaging."
Adds clinical imaging evidence that cerebellar involvement belongs within the canonical phenotype.
Cortical hyperexcitability and seizure susceptibility
The final common electrophysiological state is cortical hyperexcitability, producing cortical tremor/myoclonus and susceptibility to generalized epileptic seizures.
pyramidal neuron link
chemical synaptic transmission link ↕ DYSREGULATED
cerebral cortex link
Show evidence (2 references)
PMID:40747611 SUPPORT Other
"Electrophysiological examinations are essential in demonstrating cortical hyperexcitability and confirming the cortical origin of myoclonus."
Establishes cortical hyperexcitability as the proximate disease state linking the repeat mechanism to the clinical syndrome.
PMID:37371086 SUPPORT Other
"Neurophysiological investigations as jerk-locked back averaging (JLBA) and corticomuscular coherence analysis, giant somatosensory evoked potentials (SEPs), and the presence of long-latency reflex I (or C reflex) at rest support cortical tremor as the result of the sensorimotor cortex hyperexcitability."
Details the electrophysiological tests that demonstrate the hallmark cortical hyperexcitability state.

Pathograph

Use the checkboxes to hide or show graph categories. Hover nodes for evidence and cross-linked metadata.
Pathograph: causal mechanism network for Pentanucleotide Repeat Familial Adult Myoclonus Epilepsy Interactive directed graph showing how pathophysiology mechanisms, phenotypes, genetic factors and variants, experimental models, environmental triggers, and treatments relate through causal and linked edges.

Phenotypes

8
Eye 1
Night blindness Nyctalopia (HP:0000662)
Show evidence (1 reference)
PMID:37287551 SUPPORT Other
"Additional clinical symptoms enlarging the clinical spectrum have been described, such as cognitive decline, migraine, night blindness."
Supports night blindness as a reported additional clinical feature in some families.
Nervous System 6
Tremor Tremor (HP:0001337)
Tremorlike distal jerks of the hands often represent the earliest recognized manifestation of cortical myoclonus.
Show evidence (1 reference)
PMID:40571639 SUPPORT Other
"Benign adult familial myoclonus epilepsy (BAFME) is an autosomal dominantly inherited disease characterized by infrequent seizures and tremorous myoclonus."
Supports tremorlike myoclonus as part of the defining clinical presentation.
Context-specific annotations (1)
Onset: 10.0-22.0y
Tremorlike cortical myoclonus typically begins in the second decade and is often the earliest recognized clinical manifestation.
Show evidence (1 reference)
PMID:32194077 SUPPORT Human Clinical
"All seven affected living patients had cortical tremor with a median age at onset of 16.4 years (range, 10-22 years)."
Supports typical second-decade onset for tremorlike cortical manifestations.
Myoclonus Myoclonus (HP:0001336)
Show evidence (1 reference)
PMID:40747611 SUPPORT Other
"The key clinical manifestations include an autosomal dominant family history, tremorlike cortical myoclonus, generalized tonic-clonic seizures, photosensitivity, mild cognitive impairment, and other associated symptoms."
Identifies cortical myoclonus as the defining neurological phenotype.
Context-specific annotations (1)
Onset: 10.0-22.0y
Cortical myoclonus usually begins with the same late-adolescent or early adult onset pattern as the tremorlike distal jerks.
Show evidence (1 reference)
PMID:32194077 SUPPORT Human Clinical
"All seven affected living patients had cortical tremor with a median age at onset of 16.4 years (range, 10-22 years)."
Supports early onset of the cortical myoclonus/tremor complex.
Seizures FREQUENT Seizure (HP:0001250)
Generalized tonic-clonic seizures are the dominant epileptic phenotype and myoclonic seizures can also occur, but seizure burden is often low.
Show evidence (3 references)
PMID:38059543 SUPPORT Human Clinical
"Ninety-seven (77.6%, 97/125) patients had experienced seizures."
77.6% falls in the FREQUENT band (30-79%) and supports seizures as a common phenotype across repeat-positive FAME.
PMID:40571639 SUPPORT Other
"Benign adult familial myoclonus epilepsy (BAFME) is an autosomal dominantly inherited disease characterized by infrequent seizures and tremorous myoclonus."
Supports seizures as a core but often less prominent phenotype than myoclonus.
PMID:37287551 SUPPORT Other
"Generalized tonic-clonic and myoclonic seizures are the most common types of seizures which develop later in the course of the disease."
Clarifies the dominant seizure types and their later emergence in disease course.
Context-specific annotations (1)
Onset: mean 36.5y
Seizures usually arise after the onset of cortical tremor/myoclonus and often cluster in the third to fourth decades.
Show evidence (1 reference)
PMID:38059543 SUPPORT Human Clinical
"The seizures onset age was 36.5 ± 9.0 years, which was 6.9 years later than cortical tremors."
Supports later adult onset of seizures relative to cortical tremor/myoclonus.
Cognitive impairment Cognitive impairment (HP:0100543)
Show evidence (1 reference)
PMID:37287551 SUPPORT Other
"Additional clinical symptoms enlarging the clinical spectrum have been described, such as cognitive decline, migraine, night blindness."
Supports cognitive impairment as part of the expanded clinical spectrum in some repeat-positive FAME families.
Migraine Migraine (HP:0002076)
Show evidence (1 reference)
PMID:37287551 SUPPORT Other
"Additional clinical symptoms enlarging the clinical spectrum have been described, such as cognitive decline, migraine, night blindness."
Supports migraine as an additional but non-core phenotype within the FAME spectrum.
Cerebellar atrophy Cerebellar atrophy (HP:0001272)
Show evidence (1 reference)
PMID:40747611 SUPPORT Other
"Neuroimaging studies typically show mild cerebellar atrophy or nonspecific structural changes on magnetic resonance imaging."
Supports mild cerebellar atrophy as a recurring imaging phenotype.
Other 1
Photosensitivity OCCASIONAL
Light sensitivity and photoparoxysmal responses are recurrent but often under-recognized features in FAME and can help distinguish it from essential tremor.
Show evidence (2 references)
PMID:38059543 SUPPORT Human Clinical
"Thirty-one patients (24.8%, 31/125) reported photosensitivity history, and 79.5% (31/39) had a photoparoxysmal response."
Supports photosensitivity as an OCCASIONAL clinical feature and documents frequent photoparoxysmal responses among tested patients.
PMID:40747611 SUPPORT Other
"Notably, photosensitivity is confirmed by clinical, electrophysiological, and neuroimaging evidence, highlighting its significant yet underestimated role in the underlying etiology of FAME."
Supports photosensitivity as a diagnostically meaningful but under-recognized feature of FAME.
🧬

Genetic Associations

1
Multilocus TTTTA/TTTCA repeat expansion architecture (Positive)
Show evidence (3 references)
PMID:37021642 SUPPORT Other
"FAME occurs worldwide; however, repeat expansions in particular genes have regional geographical distributions."
Supports worldwide occurrence together with regional clustering of individual FAME loci.
PMID:39569876 SUPPORT Human Clinical
"(TTTCA)exp counts were inversely correlated with the age at onset for cortical tremor (Spearman's rho = -0.348, P = 0.005) and epilepsy (Spearman's rho = -0.424, P = 0.003)."
Shows that longer pathogenic TTTCA tracts correlate with earlier onset of both tremor and epilepsy.
PMID:40503331 SUPPORT Human Clinical
"The number of pentanucleotide repeats was extremely unstable, with median TTTCA repeat sizes ranging from 10 to 647 in the affected members of our case series under a mean sequence depth of coverage above 50 000."
Provides direct human evidence for substantial somatic repeat instability within affected families.
💊

Treatments

4
Anticonvulsant agent therapy
Action: anticonvulsant agent therapy MAXO:0000167
Agent: valproic acid levetiracetam benzodiazepine
Antiseizure medications remain the baseline symptomatic treatment for the epilepsy component of FAME, although they often do not adequately control cortical tremor or myoclonus.
Target Phenotypes: Seizure
Show evidence (2 references)
PMID:39533755 SUPPORT Human Clinical
"Familial adult myoclonus epilepsy (FAME) management relies on antiseizure medications (ASMs), which inadequately address myoclonus and cortical tremor."
Supports ASM-based symptomatic management while noting that nonseizure symptoms often remain undertreated.
PMID:40747611 SUPPORT Other
"Antiseizure medications are the cornerstone of FAME treatment, with a combination of valproate or levetiracetam with benzodiazepines serving as the first-line therapy."
Supports valproate- or levetiracetam-based regimens with benzodiazepines as named first-line pharmacotherapy for the epilepsy component of FAME.
Perampanel therapy
Action: pharmacotherapy MAXO:0000058
Low-dose perampanel is the best-supported targeted symptomatic therapy for cortical myoclonus in FAME and is associated with improved myoclonus scores together with reduced sensorimotor hyperexcitability.
Target Phenotypes: Myoclonus Tremor
Show evidence (2 references)
PMID:39533755 SUPPORT Human Clinical
"PER treatment significantly reduced UMRS total scores (p = 0.001) and action-myoclonus subscores (p = 0.002), irrespective of disease duration, age at onset, or testing time (p >0.05)."
Directly supports clinical improvement of myoclonus with low-dose perampanel.
PMID:39533755 SUPPORT Human Clinical
"In conclusion, low-dose PER is well tolerated and effective in alleviating myoclonus in FAME2 patients, supported by its modulatory effects on glutamatergic and GABAergic neuronal circuits."
Supports both tolerability and a plausible circuit-level mechanism for the symptomatic benefit.
Deep brain stimulation (experimental)
Action: deep brain stimulation MAXO:0000943
Located in: thalamic ventral intermediate nucleus Ontology label: ventral lateral nucleus of thalamus UBERON:0001925
Thalamic ventral intermediate nucleus deep brain stimulation is being explored as an adjunctive intervention for refractory familial cortical myoclonus with epilepsy.
Target Phenotypes: Myoclonus Tremor
Show evidence (1 reference)
clinicaltrials:NCT06593444 SUPPORT Human Clinical
"The primary objective of this research is to study the efficacy and safety of deep brain stimulation (DBS) of Thalamic Ventral Intermediate as adjunctive therapy for alleviating symptoms in refractory familial cortical myoclonus with epilepsy."
Supports an active interventional effort to use VIM-DBS for refractory symptoms.
Genetic counseling
Action: genetic counseling MAXO:0000079
Genetic counseling is important because the disorder is autosomal dominant, can show anticipation, and is commonly misdiagnosed before molecular confirmation.
Show evidence (1 reference)
PMID:36751956 SUPPORT Other
"Recognition of FAME will inform prognostic and genetic counseling and diagnosis of the insidious progression, which may occur in older individuals who show mild cognitive deterioration."
Directly supports the value of genetic counseling in FAME care.
🔀

Differential Diagnoses

3

Conditions with similar clinical presentations that must be differentiated from Pentanucleotide Repeat Familial Adult Myoclonus Epilepsy:

Juvenile myoclonic epilepsy
Overlapping Features JME can resemble FAME through generalized tonic-clonic and myoclonic seizures, but it lacks the characteristic cortical tremor phenotype and shared intronic pentanucleotide repeat mechanism.
Show evidence (1 reference)
PMID:36751956 SUPPORT Other
"The phenotypic features of FAME, including generalized tonic-clonic and myoclonic seizures, are also seen in other epilepsy syndromes, such as juvenile myoclonic epilepsy, with a resultant risk of misdiagnosis and lack of identification of the underlying cause."
Directly identifies JME as a major epilepsy differential for FAME.
Essential tremor
Overlapping Features Cortical tremor in FAME is frequently mistaken for essential tremor unless cortical hyperexcitability is specifically sought on neurophysiological testing.
Show evidence (1 reference)
PMID:36751956 SUPPORT Other
"Cortical myoclonus may mimic essential tremor or drug-induced tremor."
Directly supports essential tremor as a common movement-disorder differential.
Progressive myoclonus epilepsy
Overlapping Features Younger FAME patients can be mistaken for progressive myoclonus epilepsy, but the later onset, usually benign seizure course, and shared repeat mechanism distinguish repeat-positive FAME.
Show evidence (1 reference)
PMID:36751956 SUPPORT Other
"In younger individuals, the differential diagnosis includes progressive myoclonus epilepsies (PMEs), such as Unverricht-Lundborg disease, whereas, in adulthood, late-onset variants of PMEs, such as sialidoses, myoclonus epilepsy, and ataxia due to potassium channel pathogenic variants should be..."
Supports PME syndromes as an important differential diagnosis across age groups.
{ }

Source YAML

click to show
name: Pentanucleotide Repeat Familial Adult Myoclonus Epilepsy
creation_date: "2026-04-17T15:32:01Z"
updated_date: "2026-04-18T01:50:05Z"
category: Mendelian
description: >-
  Pentanucleotide repeat familial adult myoclonus epilepsy is a mechanistically
  defined autosomal dominant FAME spectrum caused by intronic TTTTA repeat
  expansions that contain pathogenic TTTCA insertions across multiple loci.
  Clinically it is characterized by late-adolescent to adult onset tremorlike
  cortical myoclonus, infrequent generalized seizures, electrophysiologic
  evidence of cortical hyperexcitability, and variable cerebellar or mild
  cognitive features. This entry is intentionally scoped to the shared
  pentanucleotide repeat mechanism rather than the broader historical syndrome
  label.
disease_term:
  preferred_term: familial adult myoclonus epilepsy
  term:
    id: MONDO:0019448
    label: benign adult familial myoclonic epilepsy
synonyms:
- familial adult myoclonus epilepsy
- FAME
- benign adult familial myoclonic epilepsy
- BAFME
- familial cortical myoclonic tremor with epilepsy
- FCMTE
- cortical tremor with epilepsy
parents:
- Epilepsy
- Movement Disorder
- Repeat Expansion Disorder
notes: >-
  This entry lumps the clinically coherent FAME syndrome only when it is
  grounded in the shared intronic TTTCA-containing pentanucleotide repeat
  mechanism. It does not absorb historical or controversial nonrepeat candidate
  loci, does not represent the separate RAPGEF2-related neurodevelopmental
  disorder caused by de novo coding variants, and excludes recently described
  MARCHF6 repeat alleles that cause familial cortical myoclonus without
  epilepsy. Clinically, the disorder remains under-recognized, occurs
  worldwide, and shows regional clustering of individual repeat loci rather
  than a single globally dominant gene.
mappings:
  mondo_mappings:
  - term:
      id: MONDO:0019448
      label: benign adult familial myoclonic epilepsy
    mapping_predicate: skos:closeMatch
    mapping_source: MONDO
    mapping_justification: >-
      MONDO provides the closest historical syndrome term, but this dismech
      entry is intentionally narrower and restricted to the established
      pentanucleotide repeat subgroup.
has_subtypes:
- name: SAMD12 repeat form
  genes:
  - preferred_term: SAMD12
    term:
      id: hgnc:31750
      label: SAMD12
  description: >-
    Canonical repeat-positive FAME1 locus and the most common established
    disease form in East Asian pedigrees.
- name: STARD7 repeat form
  genes:
  - preferred_term: STARD7
    term:
      id: hgnc:18063
      label: STARD7
  description: >-
    Repeat-positive FAME2 locus within the same mechanistic family.
- name: MARCHF6 repeat form
  genes:
  - preferred_term: MARCHF6
    term:
      id: hgnc:30550
      label: MARCHF6
  description: >-
    Classical repeat-positive FAME3 locus; this subtype is limited to the
    epilepsy phenotype and excludes small-insertion MARCHF6 alleles associated
    with familial cortical myoclonus without seizures.
- name: YEATS2 repeat form
  genes:
  - preferred_term: YEATS2
    term:
      id: hgnc:25489
      label: YEATS2
  description: >-
    Repeat-positive FAME4 locus within the shared TTTTA/TTTCA mechanism.
- name: TNRC6A repeat form
  genes:
  - preferred_term: TNRC6A
    term:
      id: hgnc:11969
      label: TNRC6A
  description: >-
    Repeat-positive FAME6 locus discovered in families clinically similar to
    canonical BAFME/FAME.
- name: RAPGEF2 repeat form
  genes:
  - preferred_term: RAPGEF2
    term:
      id: hgnc:16854
      label: RAPGEF2
  description: >-
    Repeat-positive FAME7 locus; kept distinct from the separate coding-variant
    RAPGEF2 neurodevelopmental disorder.
- name: RAI1 repeat form
  genes:
  - preferred_term: RAI1
    term:
      id: hgnc:9834
      label: RAI1
  description: >-
    Repeat-positive FAME8 locus first described in a Malian family, extending
    this repeat-expansion mechanism to an African pedigree.
inheritance:
- name: Autosomal dominant
  inheritance_term:
    preferred_term: Autosomal dominant inheritance
    term:
      id: HP:0000006
      label: Autosomal dominant inheritance
  description: >-
    Repeat-positive FAME is inherited in an autosomal dominant pattern, and
    repeat instability contributes to genetic and clinical anticipation in many
    pedigrees.
  evidence:
  - reference: PMID:40571639
    reference_title: "[Molecular genetics of benign adult familial myoclonus epilepsy]."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Benign adult familial myoclonus epilepsy (BAFME) is an autosomal
      dominantly inherited disease characterized by infrequent seizures and
      tremorous myoclonus.
    explanation: >-
      Supports autosomal dominant inheritance as the core inheritance pattern of
      the repeat-positive FAME syndrome.
  - reference: PMID:33040085
    reference_title: "DNA analysis of benign adult familial myoclonic epilepsy reveals associations between the pathogenic TTTCA repeat insertion in SAMD12 and the nonpathogenic TTTTA repeat expansion in TNRC6A."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: Genetic and clinical anticipation was observed.
    explanation: >-
      Supports clinically relevant anticipation in repeat-positive FAME
      pedigrees.
progression:
- phase: Tremorlike cortical myoclonus onset
  age_range: second to third decade
  notes: >-
    Tremorlike distal cortical myoclonus is usually the presenting feature and
    often begins in the hands.
  evidence:
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      The key clinical manifestations include an autosomal dominant family
      history, tremorlike cortical myoclonus, generalized tonic-clonic
      seizures, photosensitivity, mild cognitive impairment, and other
      associated symptoms.
    explanation: >-
      Supports tremorlike cortical myoclonus as the signature presenting feature
      of FAME.
  - reference: PMID:32194077
    reference_title: "Familial cortical myoclonic tremor with epilepsy: TTTCA/TTTTA repeat expansions and expanding phenotype in two Chinese families."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      All seven affected living patients had cortical tremor with a median age
      at onset of 16.4 years (range, 10-22 years).
    explanation: >-
      Provides cohort-level support that myoclonus/tremor often begins in late
      adolescence or early adulthood.
- phase: Later epileptic manifestations
  notes: >-
    Generalized seizures are often less frequent than myoclonus, typically begin
    several years after cortical tremor, and are usually rare or occasional
    rather than frequent.
  evidence:
  - reference: PMID:32194077
    reference_title: "Familial cortical myoclonic tremor with epilepsy: TTTCA/TTTTA repeat expansions and expanding phenotype in two Chinese families."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Convulsions occurred in 5 of 7 with a median age at onset of 32.4 years
      (range, 10-42 years).
    explanation: >-
      Supports the typical temporal ordering in which seizures are later and
      less constant than cortical tremor/myoclonus.
  - reference: PMID:38059543
    reference_title: "Seizures and electrophysiological features in familial cortical myoclonic tremor with epilepsy 1."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The seizures onset age was 36.5 ± 9.0 years, which was 6.9 years later
      than cortical tremors. The seizures were largely rare (<1/year, 58.8%)
      and occasional (1-6/year, 37.1%).
    explanation: >-
      Provides quantitative evidence that seizures generally follow cortical
      tremor and are usually infrequent.
- phase: Insidious later progression
  notes: >-
    Although the epilepsy course is typically benign, some older individuals
    develop slowly progressive cognitive or cerebellar features that can
    contribute to misdiagnosis.
  evidence:
  - reference: PMID:36751956
    reference_title: "Differential diagnosis of familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Recognition of FAME will inform prognostic and genetic counseling and
      diagnosis of the insidious progression, which may occur in older
      individuals who show mild cognitive deterioration.
    explanation: >-
      Supports a slowly progressive later phase with mild cognitive
      deterioration in a subset of older individuals.
genetic:
- name: Multilocus TTTTA/TTTCA repeat expansion architecture
  association: Positive
  presence: Positive
  notes: >-
    The causative architecture is an inserted pathogenic TTTCA repeat within an
    expanded intronic TTTTA tract across at least seven established loci.
    Repeat-positive pedigrees show marked somatic and germline instability,
    genotype-phenotype correlation with repeat size, and regional clustering of
    specific loci.
  evidence:
  - reference: PMID:37021642
    reference_title: "Genetics of familial adult myoclonus epilepsy: From linkage studies to noncoding repeat expansions."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      FAME occurs worldwide; however, repeat expansions in particular genes
      have regional geographical distributions.
    explanation: >-
      Supports worldwide occurrence together with regional clustering of
      individual FAME loci.
  - reference: PMID:39569876
    reference_title: "(TTTCA)exp Drives the Genotype-Phenotype Correlation and Genetic Anticipation in FCMTE1."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      (TTTCA)exp counts were inversely correlated with the age at onset for
      cortical tremor (Spearman's rho = -0.348, P = 0.005) and epilepsy
      (Spearman's rho = -0.424, P = 0.003).
    explanation: >-
      Shows that longer pathogenic TTTCA tracts correlate with earlier onset of
      both tremor and epilepsy.
  - reference: PMID:40503331
    reference_title: "Phenotypic and genotypic characterization of familial adult myoclonus epilepsy in a Chinese case series."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The number of pentanucleotide repeats was extremely unstable, with median
      TTTCA repeat sizes ranging from 10 to 647 in the affected members of our
      case series under a mean sequence depth of coverage above 50 000.
    explanation: >-
      Provides direct human evidence for substantial somatic repeat instability
      within affected families.
variants:
- name: SAMD12 intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the SAMD12 locus in
    which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: SAMD12
    term:
      id: hgnc:31750
      label: SAMD12
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports SAMD12 as one of the established pathogenic repeat-expansion
      loci within FAME.
- name: STARD7 intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the STARD7 locus in
    which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: STARD7
    term:
      id: hgnc:18063
      label: STARD7
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports STARD7 as one of the established pathogenic repeat-expansion
      loci within FAME.
- name: MARCHF6 intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the MARCHF6 locus
    in which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: MARCHF6
    term:
      id: hgnc:30550
      label: MARCHF6
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports MARCHF6 as one of the established pathogenic repeat-expansion
      loci within FAME.
- name: YEATS2 intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the YEATS2 locus in
    which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: YEATS2
    term:
      id: hgnc:25489
      label: YEATS2
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports YEATS2 as one of the established pathogenic repeat-expansion
      loci within FAME.
- name: TNRC6A intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the TNRC6A locus in
    which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: TNRC6A
    term:
      id: hgnc:11969
      label: TNRC6A
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports TNRC6A as one of the established pathogenic repeat-expansion
      loci within FAME.
- name: RAPGEF2 intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the RAPGEF2 locus
    in which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: RAPGEF2
    term:
      id: hgnc:16854
      label: RAPGEF2
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports RAPGEF2 as one of the established pathogenic repeat-expansion
      loci within FAME.
- name: RAI1 intronic TTTTA/TTTCA repeat expansion
  description: >-
    Pathogenic intronic pentanucleotide repeat expansion at the RAI1 locus in
    which an expanded TTTTA tract contains inserted TTTCA motifs.
  gene:
    preferred_term: RAI1
    term:
      id: hgnc:9834
      label: RAI1
  clinical_significance: PATHOGENIC
  type: intronic_pentanucleotide_repeat_expansion
  functional_effects:
  - function: transcribed repeat RNA behavior
    description: >-
      Pathogenic TTTCA-containing expansion gives rise to toxic UUUCA repeat
      RNA foci rather than a simple host-gene dosage defect.
    type: toxic RNA gain-of-function
  evidence:
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      To date, intronic pentanucleotide repeat expansions in at least seven
      genes, including SAMD12, TNRC6A, YEATS2, MARCHF6, STARD7, RAPGEF2, and
      RAI1, have been reported as causative.
    explanation: >-
      Supports RAI1 as one of the established pathogenic repeat-expansion loci
      within FAME.
pathophysiology:
- name: SAMD12 locus-specific repeat expansion
  description: >-
    The SAMD12 repeat-positive subtype is driven by a SAMD12 intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - SAMD12 repeat form
  genes:
  - preferred_term: SAMD12
    term:
      id: hgnc:31750
      label: SAMD12
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: STARD7 locus-specific repeat expansion
  description: >-
    The STARD7 repeat-positive subtype is driven by a STARD7 intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - STARD7 repeat form
  genes:
  - preferred_term: STARD7
    term:
      id: hgnc:18063
      label: STARD7
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: MARCHF6 locus-specific repeat expansion
  description: >-
    The MARCHF6 repeat-positive subtype is driven by a MARCHF6 intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - MARCHF6 repeat form
  genes:
  - preferred_term: MARCHF6
    term:
      id: hgnc:30550
      label: MARCHF6
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: YEATS2 locus-specific repeat expansion
  description: >-
    The YEATS2 repeat-positive subtype is driven by a YEATS2 intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - YEATS2 repeat form
  genes:
  - preferred_term: YEATS2
    term:
      id: hgnc:25489
      label: YEATS2
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: TNRC6A locus-specific repeat expansion
  description: >-
    The TNRC6A repeat-positive subtype is driven by a TNRC6A intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - TNRC6A repeat form
  genes:
  - preferred_term: TNRC6A
    term:
      id: hgnc:11969
      label: TNRC6A
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: RAPGEF2 locus-specific repeat expansion
  description: >-
    The RAPGEF2 repeat-positive subtype is driven by a RAPGEF2 intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - RAPGEF2 repeat form
  genes:
  - preferred_term: RAPGEF2
    term:
      id: hgnc:16854
      label: RAPGEF2
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: RAI1 locus-specific repeat expansion
  description: >-
    The RAI1 repeat-positive subtype is driven by a RAI1 intronic
    TTTCA-containing pentanucleotide repeat expansion.
  role: trigger
  subtypes:
  - RAI1 repeat form
  genes:
  - preferred_term: RAI1
    term:
      id: hgnc:9834
      label: RAI1
  downstream:
  - target: TTTCA-containing intronic pentanucleotide repeat expansion

- name: TTTCA-containing intronic pentanucleotide repeat expansion
  description: >-
    The core molecular lesion is an intronic TTTTA expansion containing
    pathogenic TTTCA insertions in one of the established FAME loci: SAMD12,
    STARD7, MARCHF6, YEATS2, TNRC6A, RAPGEF2, or RAI1.
  conforms_to: "fame_pentanucleotide_repeat_rna_toxicity#Pathogenic TTTCA-Containing Pentanucleotide Repeat Expansion"
  role: trigger
  mechanisms:
  - repeat expansion
  - toxic RNA gain-of-function
  genes:
  - preferred_term: SAMD12
    term:
      id: hgnc:31750
      label: SAMD12
  - preferred_term: STARD7
    term:
      id: hgnc:18063
      label: STARD7
  - preferred_term: MARCHF6
    term:
      id: hgnc:30550
      label: MARCHF6
  - preferred_term: YEATS2
    term:
      id: hgnc:25489
      label: YEATS2
  - preferred_term: TNRC6A
    term:
      id: hgnc:11969
      label: TNRC6A
  - preferred_term: RAPGEF2
    term:
      id: hgnc:16854
      label: RAPGEF2
  - preferred_term: RAI1
    term:
      id: hgnc:9834
      label: RAI1
  evidence:
  - reference: PMID:40200849
    reference_title: "Repeat Expansions with Small TTTCA Insertions in MARCHF6 Cause Familial Myoclonus without Epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      FAME is a rare autosomal dominant disorder caused by the same intronic
      TTTTA/TTTCA repeat expansion in seven distinct genes. TTTTA-only
      expansions are benign, whereas those containing TTTCA insertions are
      pathogenic.
    explanation: >-
      Supports the shared mechanistic lesion across the currently established
      FAME loci.
  - reference: PMID:37994247
    reference_title: "Pentanucleotide Repeat Insertions in RAI1 Cause Benign Adult Familial Myoclonic Epilepsy Type 8."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We identified TTTTA repeat expansions and TTTCA repeat insertions in
      intron 4 of the RAI1 gene that co-segregated with disease status in this
      family.
    explanation: >-
      Extends the same molecular mechanism to the seventh currently established
      locus and supports locus heterogeneity within a single repeat-driven
      disease unit.
  downstream:
  - target: UUUCA repeat RNA toxicity

- name: UUUCA repeat RNA toxicity
  description: >-
    The leading shared mechanism is toxicity from transcribed UUUCA repeat RNA
    with nuclear foci formation, rather than a simple consequence of altered
    host-gene dosage.
  conforms_to: "fame_pentanucleotide_repeat_rna_toxicity#UUUCA Repeat RNA Toxicity"
  role: central_effector
  mechanisms:
  - toxic RNA gain-of-function
  cell_types:
  - preferred_term: neuron
    term:
      id: CL:0000540
      label: neuron
  - preferred_term: Purkinje cell
    term:
      id: CL:0000121
      label: Purkinje cell
  evidence:
  - reference: PMID:41850906
    reference_title: "RNA Toxicity and Interacting RNA-Binding Protein NOVA2 of (UUUCA)exp RNA Foci in Familial Cortical Myoclonic Tremor with Epilepsy."
    supports: SUPPORT
    evidence_source: IN_VITRO
    snippet: >-
      First, (TTTCA)exp insertion neither altered SAMD12 expression nor
      translates into repeat peptides. Second, (UUUCA)exp RNA foci were
      detected in both the constructed cell line and iPSC-neurons, and
      presented toxicity effects.
    explanation: >-
      Supports host-gene-independent RNA-foci toxicity while arguing against
      repeat peptide production in iPSC-neuron models.
  - reference: PMID:37994247
    reference_title: "Pentanucleotide Repeat Insertions in RAI1 Cause Benign Adult Familial Myoclonic Epilepsy Type 8."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      CONCLUSIONS: These findings establish a new type of BAFME, BAFME8, in an
      African family and suggest that haploinsufficiency is unlikely to be the
      main pathomechanism of BAFME.
    explanation: >-
      Supports a host-gene-independent disease mechanism and argues against
      simple haploinsufficiency as the common explanation.
  downstream:
  - target: NOVA2-mediated neuronal alternative splicing dysregulation
    description: >-
      UUUCA repeat RNA can bind the neuronal splice regulator NOVA2 and disrupt
      downstream neuronal splicing programs.
  - target: Cerebellocortical circuit dysfunction

- name: NOVA2-mediated neuronal alternative splicing dysregulation
  description: >-
    UUUCA repeat RNA interacts with NOVA2, disturbs its nuclear distribution,
    and disrupts neuronal alternative splicing in patient-derived neurons.
  role: amplifier
  genes:
  - preferred_term: NOVA2
    term:
      id: hgnc:7887
      label: NOVA2
  cell_types:
  - preferred_term: neuron
    term:
      id: CL:0000540
      label: neuron
  biological_processes:
  - preferred_term: RNA splicing
    term:
      id: GO:0008380
      label: RNA splicing
    modifier: DYSREGULATED
  evidence:
  - reference: PMID:41850906
    reference_title: "RNA Toxicity and Interacting RNA-Binding Protein NOVA2 of (UUUCA)exp RNA Foci in Familial Cortical Myoclonic Tremor with Epilepsy."
    supports: SUPPORT
    evidence_source: IN_VITRO
    snippet: >-
      Third, NOVA2, a neuron-specific splicing regulator, was identified as
      the key RNA-binding protein interacting with (UUUCA)exp RNA.
    explanation: >-
      Identifies NOVA2 as the key RNA-binding protein linking UUUCA RNA foci to
      downstream neuronal dysfunction.
  - reference: PMID:41850906
    reference_title: "RNA Toxicity and Interacting RNA-Binding Protein NOVA2 of (UUUCA)exp RNA Foci in Familial Cortical Myoclonic Tremor with Epilepsy."
    supports: SUPPORT
    evidence_source: IN_VITRO
    snippet: >-
      Shared synaptic-related pathways of alternative splicing events were
      observed in both FCMTE1-iPSC-neurons and NOVA target genes.
    explanation: >-
      Supports a downstream effect of the NOVA2 defect on synapse-related
      transcript programs.
  downstream:
  - target: Synapse-related transcript isoform dysregulation
    description: >-
      NOVA2 disruption changes isoform usage among transcripts encoding
      synaptic proteins.

- name: Synapse-related transcript isoform dysregulation
  description: >-
    The neuronal splicing defect preferentially affects transcripts encoding
    synaptic proteins, altering the isoform composition of synapse-associated
    gene products rather than implying that splicing itself occurs at the
    synapse.
  role: amplifier
  cell_types:
  - preferred_term: neuron
    term:
      id: CL:0000540
      label: neuron
  cellular_components:
  - preferred_term: synapse
    term:
      id: GO:0045202
      label: synapse
  evidence:
  - reference: PMID:41850906
    reference_title: "RNA Toxicity and Interacting RNA-Binding Protein NOVA2 of (UUUCA)exp RNA Foci in Familial Cortical Myoclonic Tremor with Epilepsy."
    supports: SUPPORT
    evidence_source: IN_VITRO
    snippet: >-
      Shared synaptic-related pathways of alternative splicing events were
      observed in both FCMTE1-iPSC-neurons and NOVA target genes.
    explanation: >-
      Supports a downstream defect in splice isoforms of synapse-related
      transcripts, linking the nuclear NOVA2 defect to synaptic gene programs.
  downstream:
  - target: Cerebellocortical circuit dysfunction
  - target: Cortical hyperexcitability and seizure susceptibility

- name: Cerebellocortical circuit dysfunction
  description: >-
    Repeat-positive FAME is not purely cortical; available human data support a
    combined cortex-cerebellum disorder in which cerebellar dysfunction may
    shape or amplify cortical hyperexcitability.
  conforms_to: "fame_pentanucleotide_repeat_rna_toxicity#Cerebellocortical Circuit Dysfunction"
  role: amplifier
  cell_types:
  - preferred_term: neuron
    term:
      id: CL:0000540
      label: neuron
  - preferred_term: Purkinje cell
    term:
      id: CL:0000121
      label: Purkinje cell
  locations:
  - preferred_term: cerebral cortex
    term:
      id: UBERON:0000956
      label: cerebral cortex
  - preferred_term: cerebellum
    term:
      id: UBERON:0002037
      label: cerebellum
  biological_processes:
  - preferred_term: chemical synaptic transmission
    term:
      id: GO:0007268
      label: chemical synaptic transmission
    modifier: DYSREGULATED
  evidence:
  - reference: PMID:37371086
    reference_title: "Familial Adult Myoclonus Epilepsy: A Non-Coding Repeat Expansion Disorder of Cerebellar-Thalamic-Cortical Loop."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Moreover, neuroimaging studies and postmortem autoptic studies indicate
      cerebellar alterations and abnormal functional connectivity between the
      cerebellum and cerebrum in FAME.
    explanation: >-
      Supports a combined cerebellocortical network disorder with abnormal
      cerebellum-cerebrum connectivity.
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Neuroimaging studies typically show mild cerebellar atrophy or
      nonspecific structural changes on magnetic resonance imaging.
    explanation: >-
      Adds clinical imaging evidence that cerebellar involvement belongs within
      the canonical phenotype.
  downstream:
  - target: Cortical hyperexcitability and seizure susceptibility

- name: Cortical hyperexcitability and seizure susceptibility
  description: >-
    The final common electrophysiological state is cortical hyperexcitability,
    producing cortical tremor/myoclonus and susceptibility to generalized
    epileptic seizures.
  conforms_to: "fame_pentanucleotide_repeat_rna_toxicity#Cortical Hyperexcitability and Seizure Susceptibility"
  role: effector
  consequences:
  - Tremor
  - Myoclonus
  - Seizures
  cell_types:
  - preferred_term: pyramidal neuron
    term:
      id: CL:0000598
      label: pyramidal neuron
  locations:
  - preferred_term: cerebral cortex
    term:
      id: UBERON:0000956
      label: cerebral cortex
  biological_processes:
  - preferred_term: chemical synaptic transmission
    term:
      id: GO:0007268
      label: chemical synaptic transmission
    modifier: DYSREGULATED
  evidence:
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Electrophysiological examinations are essential in demonstrating cortical
      hyperexcitability and confirming the cortical origin of myoclonus.
    explanation: >-
      Establishes cortical hyperexcitability as the proximate disease state
      linking the repeat mechanism to the clinical syndrome.
  - reference: PMID:37371086
    reference_title: "Familial Adult Myoclonus Epilepsy: A Non-Coding Repeat Expansion Disorder of Cerebellar-Thalamic-Cortical Loop."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Neurophysiological investigations as jerk-locked back averaging (JLBA)
      and corticomuscular coherence analysis, giant somatosensory evoked
      potentials (SEPs), and the presence of long-latency reflex I (or C
      reflex) at rest support cortical tremor as the result of the
      sensorimotor cortex hyperexcitability.
    explanation: >-
      Details the electrophysiological tests that demonstrate the hallmark
      cortical hyperexcitability state.
  downstream:
  - target: Tremor
  - target: Myoclonus
  - target: Seizures
phenotypes:
- name: Tremor
  category: Neurological
  diagnostic: true
  notes: >-
    Tremorlike distal jerks of the hands often represent the earliest recognized
    manifestation of cortical myoclonus.
  phenotype_term:
    preferred_term: Tremor
    term:
      id: HP:0001337
      label: Tremor
  phenotype_contexts:
  - onset:
      min_age_years: 10.0
      max_age_years: 22.0
      notes: Median onset in one repeat-positive cohort was 16.4 years.
    notes: >-
      Tremorlike cortical myoclonus typically begins in the second decade and
      is often the earliest recognized clinical manifestation.
    evidence:
    - reference: PMID:32194077
      reference_title: "Familial cortical myoclonic tremor with epilepsy: TTTCA/TTTTA repeat expansions and expanding phenotype in two Chinese families."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        All seven affected living patients had cortical tremor with a median
        age at onset of 16.4 years (range, 10-22 years).
      explanation: >-
        Supports typical second-decade onset for tremorlike cortical
        manifestations.
  evidence:
  - reference: PMID:40571639
    reference_title: "[Molecular genetics of benign adult familial myoclonus epilepsy]."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Benign adult familial myoclonus epilepsy (BAFME) is an autosomal
      dominantly inherited disease characterized by infrequent seizures and
      tremorous myoclonus.
    explanation: >-
      Supports tremorlike myoclonus as part of the defining clinical
      presentation.
- name: Myoclonus
  category: Neurological
  diagnostic: true
  phenotype_term:
    preferred_term: Myoclonus
    term:
      id: HP:0001336
      label: Myoclonus
  phenotype_contexts:
  - onset:
      min_age_years: 10.0
      max_age_years: 22.0
      notes: Median onset in one repeat-positive cohort was 16.4 years.
    notes: >-
      Cortical myoclonus usually begins with the same late-adolescent or early
      adult onset pattern as the tremorlike distal jerks.
    evidence:
    - reference: PMID:32194077
      reference_title: "Familial cortical myoclonic tremor with epilepsy: TTTCA/TTTTA repeat expansions and expanding phenotype in two Chinese families."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        All seven affected living patients had cortical tremor with a median
        age at onset of 16.4 years (range, 10-22 years).
      explanation: >-
        Supports early onset of the cortical myoclonus/tremor complex.
  evidence:
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      The key clinical manifestations include an autosomal dominant family
      history, tremorlike cortical myoclonus, generalized tonic-clonic
      seizures, photosensitivity, mild cognitive impairment, and other
      associated symptoms.
    explanation: >-
      Identifies cortical myoclonus as the defining neurological phenotype.
- name: Seizures
  category: Neurological
  frequency: FREQUENT
  notes: >-
    Generalized tonic-clonic seizures are the dominant epileptic phenotype and
    myoclonic seizures can also occur, but seizure burden is often low.
  phenotype_term:
    preferred_term: Seizure
    term:
      id: HP:0001250
      label: Seizure
  phenotype_contexts:
  - onset:
      mean_age_years: 36.5
      notes: >-
        In one FCMTE1 cohort, seizures began on average 6.9 years later than
        cortical tremor and usually emerged in adulthood.
    notes: >-
      Seizures usually arise after the onset of cortical tremor/myoclonus and
      often cluster in the third to fourth decades.
    evidence:
    - reference: PMID:38059543
      reference_title: "Seizures and electrophysiological features in familial cortical myoclonic tremor with epilepsy 1."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        The seizures onset age was 36.5 ± 9.0 years, which was 6.9 years later
        than cortical tremors.
      explanation: >-
        Supports later adult onset of seizures relative to cortical
        tremor/myoclonus.
  evidence:
  - reference: PMID:38059543
    reference_title: "Seizures and electrophysiological features in familial cortical myoclonic tremor with epilepsy 1."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: Ninety-seven (77.6%, 97/125) patients had experienced seizures.
    explanation: >-
      77.6% falls in the FREQUENT band (30-79%) and supports seizures as a
      common phenotype across repeat-positive FAME.
  - reference: PMID:40571639
    reference_title: "[Molecular genetics of benign adult familial myoclonus epilepsy]."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Benign adult familial myoclonus epilepsy (BAFME) is an autosomal
      dominantly inherited disease characterized by infrequent seizures and
      tremorous myoclonus.
    explanation: >-
      Supports seizures as a core but often less prominent phenotype than
      myoclonus.
  - reference: PMID:37287551
    reference_title: "Familial Adult Myoclonic Epilepsy: Clinical and Genetic Approach to an Under-recognized Disease."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Generalized tonic-clonic and myoclonic seizures are the most common types
      of seizures which develop later in the course of the disease.
    explanation: >-
      Clarifies the dominant seizure types and their later emergence in disease
      course.
- name: Photosensitivity
  category: Neurological
  frequency: OCCASIONAL
  notes: >-
    Light sensitivity and photoparoxysmal responses are recurrent but often
    under-recognized features in FAME and can help distinguish it from
    essential tremor.
  evidence:
  - reference: PMID:38059543
    reference_title: "Seizures and electrophysiological features in familial cortical myoclonic tremor with epilepsy 1."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Thirty-one patients (24.8%, 31/125) reported photosensitivity history,
      and 79.5% (31/39) had a photoparoxysmal response.
    explanation: >-
      Supports photosensitivity as an OCCASIONAL clinical feature and
      documents frequent photoparoxysmal responses among tested patients.
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Notably, photosensitivity is confirmed by clinical, electrophysiological,
      and neuroimaging evidence, highlighting its significant yet
      underestimated role in the underlying etiology of FAME.
    explanation: >-
      Supports photosensitivity as a diagnostically meaningful but
      under-recognized feature of FAME.
- name: Cognitive impairment
  category: Neurological
  phenotype_term:
    preferred_term: Cognitive impairment
    term:
      id: HP:0100543
      label: Cognitive impairment
  evidence:
  - reference: PMID:37287551
    reference_title: "Familial Adult Myoclonic Epilepsy: Clinical and Genetic Approach to an Under-recognized Disease."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Additional clinical symptoms enlarging the clinical spectrum have been
      described, such as cognitive decline, migraine, night blindness.
    explanation: >-
      Supports cognitive impairment as part of the expanded clinical spectrum in
      some repeat-positive FAME families.
- name: Migraine
  category: Neurological
  phenotype_term:
    preferred_term: Migraine
    term:
      id: HP:0002076
      label: Migraine
  evidence:
  - reference: PMID:37287551
    reference_title: "Familial Adult Myoclonic Epilepsy: Clinical and Genetic Approach to an Under-recognized Disease."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Additional clinical symptoms enlarging the clinical spectrum have been
      described, such as cognitive decline, migraine, night blindness.
    explanation: >-
      Supports migraine as an additional but non-core phenotype within the FAME
      spectrum.
- name: Night blindness
  category: Ophthalmologic
  phenotype_term:
    preferred_term: Night blindness
    term:
      id: HP:0000662
      label: Nyctalopia
  evidence:
  - reference: PMID:37287551
    reference_title: "Familial Adult Myoclonic Epilepsy: Clinical and Genetic Approach to an Under-recognized Disease."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Additional clinical symptoms enlarging the clinical spectrum have been
      described, such as cognitive decline, migraine, night blindness.
    explanation: >-
      Supports night blindness as a reported additional clinical feature in some
      families.
- name: Cerebellar atrophy
  category: Neurological
  severity: Mild
  phenotype_term:
    preferred_term: Cerebellar atrophy
    term:
      id: HP:0001272
      label: Cerebellar atrophy
  evidence:
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Neuroimaging studies typically show mild cerebellar atrophy or
      nonspecific structural changes on magnetic resonance imaging.
    explanation: >-
      Supports mild cerebellar atrophy as a recurring imaging phenotype.
diagnosis:
- name: Electrophysiological evidence of cortical hyperexcitability
  description: >-
    EEG and specialized neurophysiology help distinguish FAME from essential
    tremor, juvenile myoclonic epilepsy, and progressive myoclonus epilepsies
    by demonstrating cortical myoclonus and characteristic epileptiform
    patterns.
  results: >-
    Giant SEPs, long-loop/C reflexes, JLBA or corticomuscular coherence, plus
    EEG evidence such as occipital-predominant interictal epileptiform
    discharges or photosensitivity, support the diagnosis.
  evidence:
  - reference: PMID:37371086
    reference_title: "Familial Adult Myoclonus Epilepsy: A Non-Coding Repeat Expansion Disorder of Cerebellar-Thalamic-Cortical Loop."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Neurophysiological investigations as jerk-locked back averaging (JLBA)
      and corticomuscular coherence analysis, giant somatosensory evoked
      potentials (SEPs), and the presence of long-latency reflex I (or C
      reflex) at rest support cortical tremor as the result of the
      sensorimotor cortex hyperexcitability.
    explanation: >-
      Supports the core electrophysiological diagnostic signature of cortical
      hyperexcitability.
  - reference: PMID:38059543
    reference_title: "Seizures and electrophysiological features in familial cortical myoclonic tremor with epilepsy 1."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Interictal epileptiform discharges (IEDs) were recorded in 69.1% (56/81)
      of patients. Thirty-three patients showed generalized IEDs and 72.7%
      (24/33) were occipitally dominant, while 23 patients presented with focal
      IEDs with 65.2% (15/23) taking place over the occipital lobe.
    explanation: >-
      Provides a distinctive EEG pattern that helps point the workup toward
      FAME.
- name: Molecular repeat expansion testing
  diagnosis_term:
    preferred_term: genetic testing
    term:
      id: MAXO:0000127
      label: genetic testing
  description: >-
    Repeat-primed PCR can be used for initial screening, but molecular
    confirmation generally requires long-read sequencing because conventional
    short-read, exome, or Sanger approaches do not reliably resolve these
    intronic repeat expansions or their motif composition.
  results: >-
    Detection of a pathogenic TTTCA-containing intronic repeat expansion at one
    of the known FAME loci confirms the diagnosis and can define the subtype.
  evidence:
  - reference: PMID:40503331
    reference_title: "Phenotypic and genotypic characterization of familial adult myoclonus epilepsy in a Chinese case series."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Repeat-primed PCR was used for initial screening. Long-range PCR-based
      enrichment, followed by targeted deep HiFi long-read sequencing, was
      performed to precisely clarify the detailed information of causative
      pentanucleotide TTTTA/TTTCA repeat expansion.
    explanation: >-
      Supports a practical workflow of screening followed by long-read
      resolution of the pathogenic repeat architecture.
  - reference: PMID:41219789
    reference_title: "Targeted nanopore long-read sequencing panel for the molecular diagnosis of intronic expansion in familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Detecting these repeat expansions using conventional sequencing
      techniques (Sanger or short-read next-generation sequencing) is not
      feasible as they cannot reliably span or characterize long repetitive
      elements.
    explanation: >-
      Shows why standard sequencing approaches frequently miss FAME expansions.
  - reference: PMID:40788430
    reference_title: "First clinical diagnosis of FAME3 via commercial Long-Read sequencing reveals mosaic repeat expansion in MARCHF6 gene."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Conventional genetic testing often fails to detect this expansion due to
      its repetitive structure and intronic location.
    explanation: >-
      Independently confirms the diagnostic limitation of conventional testing
      in another FAME locus.
differential_diagnoses:
- name: Juvenile myoclonic epilepsy
  description: >-
    JME can resemble FAME through generalized tonic-clonic and myoclonic
    seizures, but it lacks the characteristic cortical tremor phenotype and
    shared intronic pentanucleotide repeat mechanism.
  evidence:
  - reference: PMID:36751956
    reference_title: "Differential diagnosis of familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      The phenotypic features of FAME, including generalized tonic-clonic and
      myoclonic seizures, are also seen in other epilepsy syndromes, such as
      juvenile myoclonic epilepsy, with a resultant risk of misdiagnosis and
      lack of identification of the underlying cause.
    explanation: >-
      Directly identifies JME as a major epilepsy differential for FAME.
- name: Essential tremor
  description: >-
    Cortical tremor in FAME is frequently mistaken for essential tremor unless
    cortical hyperexcitability is specifically sought on neurophysiological
    testing.
  evidence:
  - reference: PMID:36751956
    reference_title: "Differential diagnosis of familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Cortical myoclonus may mimic essential tremor or drug-induced tremor.
    explanation: >-
      Directly supports essential tremor as a common movement-disorder
      differential.
- name: Progressive myoclonus epilepsy
  description: >-
    Younger FAME patients can be mistaken for progressive myoclonus epilepsy,
    but the later onset, usually benign seizure course, and shared repeat
    mechanism distinguish repeat-positive FAME.
  evidence:
  - reference: PMID:36751956
    reference_title: "Differential diagnosis of familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      In younger individuals, the differential diagnosis includes progressive
      myoclonus epilepsies (PMEs), such as Unverricht-Lundborg disease,
      whereas, in adulthood, late-onset variants of PMEs, such as sialidoses,
      myoclonus epilepsy, and ataxia due to potassium channel pathogenic
      variants should be considered.
    explanation: >-
      Supports PME syndromes as an important differential diagnosis across age
      groups.
treatments:
- name: Anticonvulsant agent therapy
  description: >-
    Antiseizure medications remain the baseline symptomatic treatment for the
    epilepsy component of FAME, although they often do not adequately control
    cortical tremor or myoclonus.
  treatment_term:
    preferred_term: anticonvulsant agent therapy
    term:
      id: MAXO:0000167
      label: anticonvulsant agent therapy
    therapeutic_agent:
    - preferred_term: valproic acid
      term:
        id: CHEBI:39867
        label: valproic acid
    - preferred_term: levetiracetam
      term:
        id: CHEBI:6437
        label: levetiracetam
    - preferred_term: benzodiazepine
      term:
        id: CHEBI:22720
        label: benzodiazepine
  target_phenotypes:
  - preferred_term: Seizure
    term:
      id: HP:0001250
      label: Seizure
  evidence:
  - reference: PMID:39533755
    reference_title: "Clinical efficacy of low-dose Perampanel correlates with neurophysiological changes in familial adult myoclonus epilepsy 2."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Familial adult myoclonus epilepsy (FAME) management relies on antiseizure
      medications (ASMs), which inadequately address myoclonus and cortical
      tremor.
    explanation: >-
      Supports ASM-based symptomatic management while noting that nonseizure
      symptoms often remain undertreated.
  - reference: PMID:40747611
    reference_title: "Familial adult myoclonus epilepsy: A comprehensive diagnostic strategy for clinical practice."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Antiseizure medications are the cornerstone of FAME treatment, with a
      combination of valproate or levetiracetam with benzodiazepines serving as
      the first-line therapy.
    explanation: >-
      Supports valproate- or levetiracetam-based regimens with
      benzodiazepines as named first-line pharmacotherapy for the epilepsy
      component of FAME.
- name: Perampanel therapy
  description: >-
    Low-dose perampanel is the best-supported targeted symptomatic therapy for
    cortical myoclonus in FAME and is associated with improved myoclonus scores
    together with reduced sensorimotor hyperexcitability.
  treatment_term:
    preferred_term: pharmacotherapy
    term:
      id: MAXO:0000058
      label: pharmacotherapy
  target_phenotypes:
  - preferred_term: Myoclonus
    term:
      id: HP:0001336
      label: Myoclonus
  - preferred_term: Tremor
    term:
      id: HP:0001337
      label: Tremor
  evidence:
  - reference: PMID:39533755
    reference_title: "Clinical efficacy of low-dose Perampanel correlates with neurophysiological changes in familial adult myoclonus epilepsy 2."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      PER treatment significantly reduced UMRS total scores (p = 0.001) and
      action-myoclonus subscores (p = 0.002), irrespective of disease
      duration, age at onset, or testing time (p >0.05).
    explanation: >-
      Directly supports clinical improvement of myoclonus with low-dose
      perampanel.
  - reference: PMID:39533755
    reference_title: "Clinical efficacy of low-dose Perampanel correlates with neurophysiological changes in familial adult myoclonus epilepsy 2."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      In conclusion, low-dose PER is well tolerated and effective in
      alleviating myoclonus in FAME2 patients, supported by its modulatory
      effects on glutamatergic and GABAergic neuronal circuits.
    explanation: >-
      Supports both tolerability and a plausible circuit-level mechanism for
      the symptomatic benefit.
- name: Deep brain stimulation (experimental)
  description: >-
    Thalamic ventral intermediate nucleus deep brain stimulation is being
    explored as an adjunctive intervention for refractory familial cortical
    myoclonus with epilepsy.
  treatment_term:
    preferred_term: deep brain stimulation
    term:
      id: MAXO:0000943
      label: deep brain stimulation
    located_in:
      preferred_term: thalamic ventral intermediate nucleus
      term:
        id: UBERON:0001925
        label: ventral lateral nucleus of thalamus
  target_phenotypes:
  - preferred_term: Myoclonus
    term:
      id: HP:0001336
      label: Myoclonus
  - preferred_term: Tremor
    term:
      id: HP:0001337
      label: Tremor
  evidence:
  - reference: clinicaltrials:NCT06593444
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The primary objective of this research is to study the efficacy and
      safety of deep brain stimulation (DBS) of Thalamic Ventral Intermediate
      as adjunctive therapy for alleviating symptoms in refractory familial
      cortical myoclonus with epilepsy.
    explanation: >-
      Supports an active interventional effort to use VIM-DBS for refractory
      symptoms.
- name: Genetic counseling
  description: >-
    Genetic counseling is important because the disorder is autosomal dominant,
    can show anticipation, and is commonly misdiagnosed before molecular
    confirmation.
  treatment_term:
    preferred_term: genetic counseling
    term:
      id: MAXO:0000079
      label: genetic counseling
  evidence:
  - reference: PMID:36751956
    reference_title: "Differential diagnosis of familial adult myoclonic epilepsy."
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Recognition of FAME will inform prognostic and genetic counseling and
      diagnosis of the insidious progression, which may occur in older
      individuals who show mild cognitive deterioration.
    explanation: >-
      Directly supports the value of genetic counseling in FAME care.
📚

References & Deep Research

Deep Research

2
Falcon
Disease Characteristics Research Template
Edison Scientific Literature 58 citations 2026-04-17T09:12:57.345558

Question: You are an expert researcher providing comprehensive, well-cited information.

Provide detailed information focusing on: 1. Key concepts and definitions with current understanding 2. Recent developments and latest research (prioritize 2023-2024 sources) 3. Current applications and real-world implementations 4. Expert opinions and analysis from authoritative sources 5. Relevant statistics and data from recent studies

Format as a comprehensive research report with proper citations. Include URLs and publication dates where available. Always prioritize recent, authoritative sources and provide specific citations for all major claims.

Disease Characteristics Research Template

Target Disease

  • Disease Name: Pentanucleotide Repeat Familial Adult Myoclonus Epilepsy
  • MONDO ID: (if available)
  • Category: Mendelian

Research Objectives

Please provide a comprehensive research report on Pentanucleotide Repeat Familial Adult Myoclonus Epilepsy covering all of the disease characteristics listed below. This report will be used to populate a disease knowledge base entry. Be thorough and cite primary literature (PMID preferred) for all claims.

For each section, suggested databases/resources are listed. These are the first places you should search for information on each topic.


1. Disease Information

Search first: OMIM, Orphanet, ICD-10/ICD-11, MeSH, PubMed

  • What is the disease? Provide a concise overview.
  • What are the key identifiers? (OMIM, Orphanet, ICD-10/ICD-11, MeSH, Mondo)
  • What are the common synonyms and alternative names?
  • Is the information derived from individual patients (e.g., EHR) or aggregated disease-level resources?

2. Etiology

  • Disease Causal Factors: What are the primary causes? (genetic, environmental, infectious, mechanistic)
  • Risk Factors:

    Search first: PubMed, Cochrane Library, UpToDate, clinical guidelines, ClinVar, ClinGen, GWAS Catalog, PheGenI, CTD, CDC, WHO, epidemiological databases

  • Genetic risk factors (causal variants, susceptibility loci, modifier genes)
  • Environmental risk factors (toxins, lifestyle, occupational exposures, age, sex, family history)
  • Protective Factors:

    Search first: PubMed, Cochrane Library, clinical trial databases, GWAS Catalog, gnomAD, WHO, CDC, nutrition databases

  • Genetic protective factors (protective variants, modifier alleles)
  • Environmental protective factors (diet, lifestyle, exposures that reduce risk)
  • Gene-Environment Interactions: How do genetic and environmental factors interact to influence disease?

    Search first: CTD, PubMed, PheGenI, GxE databases

3. Phenotypes

Search first: HPO (Human Phenotype Ontology), OMIM, Orphanet, PubMed, clinicaltrials.gov, MedDRA, SNOMED CT, DECIPHER, LOINC

For each phenotype, provide: - Phenotype type: symptoms, clinical signs, physical manifestations, behavioral changes, or laboratory abnormalities

For symptoms/signs: HPO, OMIM, Orphanet, PubMed For behavioral changes: HPO, DSM, RDoC (Research Domain Criteria), PubMed For laboratory abnormalities: LOINC, SNOMED CT, LabTests Online, PubMed - Phenotype characteristics: Search first: OMIM, Orphanet, HPO, PubMed - Age of symptom onset (neonatal, childhood, adult-onset, late-onset) - Symptom severity (mild, moderate, severe, variable) - Symptom progression (stable, progressive, episodic, fluctuating) - Frequency among affected individuals (percentage or qualitative) - Quality of life impact: Effects on daily functioning and well-being (per-phenotype when possible) Search first: EQ-5D database, SF-36, WHO QOL databases, PubMed - Suggest HPO (Human Phenotype Ontology) terms for each phenotype

4. Genetic/Molecular Information

  • Causal Genes: Gene mutations or chromosomal abnormalities responsible for disease (gene symbols, OMIM IDs)

    Search first: OMIM, ClinVar, HGMD, Ensembl, NCBI Gene

  • Pathogenic Variants:
  • Affected genes (gene symbols, HGNC IDs) > Search first: OMIM, NCBI Gene, Ensembl, HGNC, UniProt, GeneCards
  • Variant classification (pathogenic, likely pathogenic, VUS per ACMG/AMP guidelines) > Search first: ClinVar, ClinGen, ACMG/AMP guidelines, VarSome
  • Variant type/class (missense, frameshift, nonsense, splice-site, structural)
  • Allele frequency in population databases > Search first: gnomAD, 1000 Genomes, ExAC, TOPMed, dbSNP
  • Somatic vs germline origin > Search first: COSMIC (somatic), ClinVar, ICGC, TCGA
  • Functional consequences (loss of function, gain of function, dominant negative)
  • Modifier Genes: Genes that modify disease severity or expression
  • Epigenetic Information: DNA methylation, histone modifications, chromatin changes affecting disease

    Search first: ENCODE, Roadmap Epigenomics, MethBase, DiseaseMeth

  • Chromosomal Abnormalities: Large-scale genetic changes (aneuploidy, translocations, inversions)

    Search first: DECIPHER, ClinVar, ECARUCA, UCSC Genome Browser

5. Environmental Information

  • Environmental Factors: Non-genetic contributing factors (toxins, radiation, pollution, occupational exposure)

    Search first: CTD (Comparative Toxicogenomics Database), TOXNET, PubMed, EPA databases

  • Lifestyle Factors: Behavioral factors (smoking, diet, exercise, alcohol consumption)

    Search first: CDC databases, WHO, PubMed, NHANES

  • Infectious Agents: If applicable, pathogens causing or triggering disease (bacteria, viruses, fungi, parasites)

    Search first: NCBI Taxonomy, ViPR, BV-BRC, MicrobeDB, GIDEON

6. Mechanism / Pathophysiology

  • Molecular Pathways: Specific signaling cascades or biochemical pathways involved (Wnt, MAPK, mTOR, PI3K-AKT, etc.)

    Search first: KEGG, Reactome, WikiPathways, PathBank, BioCyc

  • Cellular Processes: Cell-level mechanisms (apoptosis, autophagy, cell cycle dysregulation, inflammation, etc.)

    Search first: Gene Ontology (GO), Reactome, KEGG, PubMed

  • Protein Dysfunction: How protein structure or function is altered (misfolding, aggregation, loss of function, gain of function)

    Search first: UniProt, PDB (Protein Data Bank), InterPro, Pfam, AlphaFold

  • Metabolic Changes: Alterations in metabolic processes (energy metabolism, lipid metabolism, amino acid metabolism)

    Search first: KEGG, BioCyc, HMDB (Human Metabolome Database), BRENDA

  • Immune System Involvement: Role of immune response (autoimmunity, immunodeficiency, chronic inflammation)

    Search first: ImmPort, Immunome Database, IEDB, Gene Ontology

  • Tissue Damage Mechanisms: How tissues/ are injured (oxidative stress, ischemia, fibrosis, necrosis)

    Search first: PubMed, Gene Ontology, Reactome

  • Biochemical Abnormalities: Specific molecular defects (enzyme deficiencies, receptor dysfunction, ion channel defects)

    Search first: BRENDA, UniProt, KEGG, OMIM, PubMed

  • Epigenetic Changes: DNA methylation, histone modifications affecting gene expression in disease

    Search first: ENCODE, Roadmap Epigenomics, MethBase, DiseaseMeth

  • Molecular Profiling (if available):
  • Transcriptomics/gene expression changes > Search first: GEO (Gene Expression Omnibus), ArrayExpress, GTEx, Human Cell Atlas, SRA
  • Proteomics findings > Search first: PRIDE, ProteomeXchange, Human Protein Atlas, STRING, BioGRID
  • Metabolomics signatures > Search first: MetaboLights, Metabolomics Workbench, HMDB, METLIN
  • Lipidomics alterations > Search first: LIPID MAPS, SwissLipids, LipidHome, Metabolomics Workbench
  • Genomic structural features > Search first: UCSC Genome Browser, Ensembl, NCBI, dbVar, DGV
  • Advanced Technologies (if applicable):
  • Single-cell analysis findings (cell-type specific mechanisms, cellular heterogeneity) > Search first: Human Cell Atlas, Single Cell Portal, GEO, CELLxGENE
  • Spatial transcriptomics findings > Search first: GEO, Spatial Research, Vizgen, 10x Genomics data
  • Multi-omics integration results > Search first: TCGA, ICGC, cBioPortal, LinkedOmics, PubMed
  • Functional genomics screens (CRISPR, RNAi) > Search first: DepMap, GenomeRNAi, PubMed, BioGRID ORCS

For each mechanism, describe: - The causal chain from initial trigger to clinical manifestation - Which mechanisms are upstream vs downstream - What cell types and biological processes are involved - Suggest GO terms for biological processes and CL terms for cell types

7. Anatomical Structures Affected

  • Organ Level:
  • Primary organs directly affected
  • Secondary organ involvement (complications, secondary effects)
  • Body systems involved (cardiovascular, nervous, digestive, respiratory, endocrine, etc.)

    Search first: Uberon, FMA (Foundational Model of Anatomy), OMIM, HPO, ICD-11, MeSH, SNOMED CT

  • Tissue and Cell Level:
  • Specific tissue types affected (epithelial, connective, muscle, nervous)
  • Specific cell populations targeted (with Cell Ontology terms)

    Search first: Uberon, Human Protein Atlas, Cell Ontology, Human Cell Atlas, CellMarker, PanglaoDB

  • Subcellular Level:
  • Cellular compartments involved (mitochondria, nucleus, ER, lysosomes) (with GO Cellular Component terms)

    Search first: Gene Ontology (Cellular Component), UniProt, Human Protein Atlas

  • Localization:
  • Specific anatomical sites (with UBERON terms) > Search first: FMA, Uberon, NeuroNames (for brain), SNOMED CT
  • Lateralization (unilateral, bilateral, asymmetric) > Search first: HPO, clinical literature, imaging databases

8. Temporal Development

  • Onset:
  • Typical age of onset (congenital, pediatric, adult, geriatric)
  • Onset pattern (acute, subacute, chronic, insidious)

    Search first: OMIM, Orphanet, HPO, PubMed

  • Progression:
  • Disease stages (early, intermediate, advanced, end-stage) > Search first: Cancer Staging Manual (AJCC), WHO classifications, PubMed
  • Progression rate (rapid, slow, variable)
  • Disease course pattern (episodic, relapsing-remitting, progressive, stable)
  • Disease duration (self-limited, chronic lifelong)

    Search first: Disease registries, longitudinal cohort databases, natural history studies, PubMed, Orphanet, OMIM

  • Patterns:
  • Remission patterns (spontaneous, treatment-induced) > Search first: Clinical trial databases, disease registries, PubMed
  • Critical periods (time windows of vulnerability or opportunity for intervention) > Search first: PubMed, developmental biology databases, clinical guidelines

9. Inheritance and Population

  • Epidemiology:
  • Prevalence (cases per 100,000 at given time)
  • Incidence (new cases per 100,000 per year)

    Search first: Orphanet, CDC, WHO, GBD (Global Burden of Disease), national registries, SEER, disease registries

  • For Genetic Etiology:
  • Inheritance pattern (AD, AR, X-linked, mitochondrial, multifactorial, polygenic) > Search first: OMIM, Orphanet, ClinVar, GTR (Genetic Testing Registry)
  • Penetrance (complete, incomplete, age-dependent) > Search first: ClinVar, OMIM, PubMed, ClinGen
  • Expressivity (variable, consistent) > Search first: OMIM, ClinVar, PubMed
  • Genetic anticipation (increasing severity in successive generations) > Search first: OMIM, PubMed (especially for repeat expansion disorders)
  • Germline mosaicism > Search first: ClinVar, OMIM, genetic counseling literature, PubMed
  • Founder effects (population-specific mutations) > Search first: gnomAD, population genetics databases, PubMed
  • Consanguinity role > Search first: OMIM, population studies, genetic counseling resources
  • Carrier frequency > Search first: gnomAD, carrier screening databases, GeneReviews, GTR
  • Population Demographics:
  • Affected populations (ethnic or demographic groups with higher prevalence) > Search first: gnomAD, 1000 Genomes, PAGE Study, PubMed, population registries
  • Geographic distribution (endemic areas, regional variation) > Search first: WHO, CDC, GBD, Orphanet, geographic epidemiology databases
  • Geographic distribution of specific variants
  • Sex ratio (male:female) > Search first: Disease registries, OMIM, PubMed, epidemiological databases
  • Age distribution of affected individuals > Search first: CDC, disease registries, SEER, Orphanet

10. Diagnostics

  • Clinical Tests:
  • Laboratory tests (blood, urine, tissue chemistry, specific enzyme assays) > Search first: LOINC, LabTests Online, PubMed
  • Biomarkers (proteins, metabolites, genetic markers, circulating biomarkers) > Search first: FDA Biomarker List, BEST (Biomarkers, EndpointS, and other Tools), PubMed
  • Imaging studies (X-ray, CT, MRI, PET, ultrasound) > Search first: RadLex, DICOM, Radiopaedia, imaging databases
  • Functional tests (pulmonary function, cardiac stress tests) > Search first: LOINC, clinical guidelines, PubMed
  • Electrophysiology (EEG, EMG, ECG, nerve conduction studies) > Search first: LOINC, clinical neurophysiology databases, PubMed
  • Biopsy findings (histopathology, immunohistochemistry) > Search first: SNOMED CT, College of American Pathologists resources, PubMed
  • Pathology findings (microscopic examination) > Search first: SNOMED CT, Digital Pathology databases, PubMed
  • Genetic Testing:

    Search first: GTR (Genetic Testing Registry), GeneReviews, ClinGen

  • Overview of recommended genetic testing approach
  • Whole genome sequencing (WGS) utility > Search first: GTR, ClinVar, GEL (Genomics England), gnomAD
  • Whole exome sequencing (WES) utility > Search first: GTR, ClinVar, OMIM, GeneMatcher
  • Gene panels (which panels, which genes) > Search first: GTR, ClinVar, laboratory-specific databases
  • Single gene testing > Search first: GTR, ClinVar, OMIM, GeneReviews
  • Chromosomal microarray (CMA) > Search first: DECIPHER, ClinVar, dbVar, ECARUCA
  • Karyotyping > Search first: Chromosome Abnormality Database, ClinVar, cytogenetics resources
  • FISH > Search first: ClinVar, cytogenetics databases, PubMed
  • Mitochondrial DNA testing > Search first: MITOMAP, MSeqDR, ClinVar, GTR
  • Repeat expansion testing > Search first: GTR, ClinVar, repeat expansion databases, PubMed
  • Omics-Based Diagnostics (if applicable):
  • RNA sequencing / transcriptomics > Search first: GEO, ArrayExpress, GTEx, RNA-seq databases
  • Proteomics > Search first: PRIDE, ProteomeXchange, FDA Biomarker database
  • Metabolomics > Search first: MetaboLights, Metabolomics Workbench, HMDB
  • Epigenomics > Search first: GEO, ENCODE, Roadmap Epigenomics, MethBase
  • Liquid biopsy > Search first: COSMIC, ClinVar, liquid biopsy databases, PubMed
  • Clinical Criteria:
  • Standardized diagnostic criteria (DSM, ICD, society guidelines) > Search first: DSM-5, ICD-11, clinical society guidelines, UpToDate
  • Differential diagnosis (other conditions to rule out, with distinguishing features) > Search first: DynaMed, UpToDate, clinical decision support systems
  • Screening:
  • Screening methods for asymptomatic individuals (newborn screening, carrier screening, cascade screening) > Search first: ACMG recommendations, CDC newborn screening, GTR

11. Outcome/Prognosis

  • Survival and Mortality:
  • Survival rate (5-year, 10-year, overall) > Search first: SEER, cancer registries, disease-specific registries, PubMed
  • Life expectancy (with and without treatment if applicable) > Search first: Orphanet, disease registries, actuarial databases, PubMed
  • Mortality rate > Search first: CDC, WHO, GBD, national mortality databases
  • Disease-specific mortality (deaths directly attributable to disease) > Search first: Disease registries, CDC Wonder, GBD, PubMed
  • Morbidity and Function:
  • Morbidity (disease-related disability and health impacts) > Search first: GBD, WHO, disability databases, PubMed
  • Disability outcomes (long-term functional impairments) > Search first: ICF (International Classification of Functioning), disability registries
  • Quality of life measures (EQ-5D, SF-36, PROMIS, disease-specific tools) > Search first: EQ-5D database, SF-36, PROMIS, PubMed
  • Disease Course:
  • Complications (secondary problems: infections, organ failure, etc.) > Search first: ICD codes, disease registries, clinical databases, PubMed
  • Recovery potential (likelihood and extent of recovery, with vs without treatment) > Search first: Natural history studies, rehabilitation databases, PubMed
  • Prediction:
  • Prognostic factors (age, disease severity, biomarkers, treatment response) > Search first: Prognostic models databases, clinical calculators, PubMed
  • Prognostic biomarkers (molecular markers predicting disease course) > Search first: FDA Biomarker database, PubMed, cancer prognostic databases

12. Treatment

  • Pharmacotherapy:
  • Pharmacological treatments (drug names, drug classes, mechanisms of action) > Search first: DrugBank, RxNorm, ATC classification, DailyMed, FDA databases
  • Pharmacogenomics (how genetic variants affect drug metabolism, efficacy, toxicity) > Search first: PharmGKB, CPIC (Clinical Pharmacogenetics), FDA Table of PGx Biomarkers
  • Advanced Therapeutics:
  • Gene therapy (viral vectors, CRISPR, gene replacement, gene editing) > Search first: ClinicalTrials.gov, FDA gene therapy database, ASGCT resources
  • Cell therapy (stem cell transplant, CAR-T, cellular therapeutics) > Search first: ClinicalTrials.gov, FDA cell therapy database, FACT standards
  • RNA-based therapies (ASOs, siRNA, mRNA therapies) > Search first: ClinicalTrials.gov, FDA approvals, PubMed
  • Targeted therapies (treatments directed at specific molecular targets) > Search first: My Cancer Genome, OncoKB, ClinicalTrials.gov, FDA approvals
  • Immunotherapies (checkpoint inhibitors, monoclonal antibodies) > Search first: Cancer Immunotherapy Database, FDA approvals, ClinicalTrials.gov
  • Surgical and Interventional:
  • Surgical interventions (types of surgery, timing, outcomes) > Search first: CPT codes, surgical registries, clinical guidelines, PubMed
  • Supportive and Rehabilitative:
  • Supportive care (symptom management, pain control, nutrition) > Search first: Clinical guidelines, Cochrane Library, PubMed
  • Rehabilitation (physical therapy, occupational therapy, speech therapy) > Search first: Rehabilitation medicine databases, clinical guidelines, PubMed
  • Experimental:
  • Experimental treatments in clinical trials (with NCT identifiers if available) > Search first: ClinicalTrials.gov, EU Clinical Trials Register, WHO ICTRP
  • Treatment Outcomes:
  • Treatment response rates > Search first: Clinical trial databases, FDA reviews, systematic reviews, PubMed
  • Side effects and adverse events > Search first: FDA Adverse Event Reporting System (FAERS), MedWatch, PubMed
  • Treatment Strategy:
  • Treatment algorithms (clinical pathways, decision trees) > Search first: Clinical practice guidelines, NCCN Guidelines, UpToDate
  • Combination therapies > Search first: ClinicalTrials.gov, treatment guidelines, PubMed
  • Personalized medicine approaches (genotype-guided treatment) > Search first: My Cancer Genome, CIViC, PharmGKB, precision medicine databases

For each treatment, suggest MAXO (Medical Action Ontology) terms where applicable.

13. Prevention

  • Prevention Levels:
  • Primary prevention (preventing disease occurrence: vaccination, risk factor modification) > Search first: CDC, WHO, USPSTF recommendations, Cochrane Library
  • Secondary prevention (early detection and treatment: screening programs, early intervention) > Search first: USPSTF, CDC screening guidelines, WHO
  • Tertiary prevention (preventing complications in those with disease) > Search first: Clinical guidelines, disease management protocols, PubMed
  • Immunization: Vaccine strategies (if applicable)

    Search first: CDC vaccine schedules, WHO immunization, FDA vaccine database

  • Screening and Early Detection:
  • Screening programs (population-based: newborn screening, cancer screening) > Search first: CDC screening programs, USPSTF, cancer screening databases
  • Genetic screening (carrier screening, preimplantation genetic diagnosis, prenatal testing) > Search first: ACMG recommendations, ACOG guidelines, GTR
  • Risk stratification (identifying high-risk individuals for targeted prevention) > Search first: Risk prediction models, clinical calculators, PubMed
  • Behavioral Interventions: Lifestyle modifications to reduce risk

    Search first: CDC, WHO, behavioral intervention databases, Cochrane Library

  • Counseling: Genetic counseling (risk assessment, family planning guidance)

    Search first: NSGC resources, ACMG guidelines, GeneReviews

  • Public Health:
  • Public health interventions (sanitation, vector control, health education) > Search first: CDC, WHO, public health databases, PubMed
  • Environmental interventions (reducing environmental risk factors) > Search first: EPA databases, WHO environmental health, PubMed
  • Prophylaxis: Preventive medications or procedures

    Search first: Clinical guidelines, FDA approvals, PubMed

14. Other Species / Natural Disease

  • Taxonomy: Species affected (with NCBI Taxon identifiers)

    Search first: NCBI Taxonomy

  • Breed: Specific breeds affected (with VBO identifiers if applicable)

    Search first: VBO (Vertebrate Breed Ontology)

  • Gene: Orthologous genes in other species (with NCBI Gene IDs)

    Search first: NCBI Gene

  • Natural Disease:
  • Naturally occurring disease in other species (companion animals, wildlife) > Search first: OMIA (Online Mendelian Inheritance in Animals), VetCompass, PubMed
  • Veterinary relevance and importance in animal health > Search first: OMIA, veterinary databases, PubMed
  • Comparative Biology:
  • Comparative pathology (similarities and differences across species) > Search first: OMIA, comparative pathology databases, PubMed
  • Evolutionary conservation of disease mechanisms > Search first: HomoloGene, OrthoMCL, Alliance of Genome Resources
  • Transmission (if applicable):
  • Zoonotic potential > Search first: CDC zoonotic diseases, WHO zoonoses, GIDEON
  • Cross-species susceptibility > Search first: NCBI Taxonomy, veterinary databases, PubMed

15. Model Organisms

  • Model Types:
  • Model organism type (mammalian, invertebrate, cellular, in vitro) > Search first: Alliance of Genome Resources, model organism databases
  • Specific model systems (mouse, rat, zebrafish, Drosophila, C. elegans, yeast, cell lines, organoids, iPSCs) > Search first: MGI, RGD, ZFIN, FlyBase, WormBase, SGD, ATCC, Cellosaurus
  • Induced models (drug treatment, surgical intervention, environmental manipulation) > Search first: MGI, model organism databases, PubMed
  • Genetic Models:
  • Types available (knockout, knock-in, transgenic, conditional, humanized) > Search first: MGI, IMPC, KOMP, EuMMCR, IMSR
  • Model Characteristics:
  • Phenotype recapitulation (how well model reproduces human disease features) > Search first: Model organism databases, comparative studies, PubMed
  • Model limitations (aspects of human disease not captured) > Search first: Model organism databases, PubMed, review articles
  • Applications:
  • Research applications (what aspects of disease can be studied) > Search first: Model organism databases, PubMed
  • Resources:
  • Model databases > Search first: MGI, RGD, ZFIN, FlyBase, WormBase, IMSR, EMMA, MMRRC

Citation Requirements

  • Cite primary literature (PMID preferred) for all mechanistic and clinical claims
  • Prioritize recent reviews and landmark papers
  • Include direct quotes from abstracts where possible to support key statements
  • Distinguish evidence source types: human clinical, model organism, in vitro, computational

Output Format

Structure your response as a comprehensive narrative organized by the sections above. For each section, provide: - Factual content with specific details (numbers, percentages, gene names, variant nomenclature) - Ontology term suggestions (HPO, GO, CL, UBERON, CHEBI, MAXO, MONDO) where applicable - Evidence citations with PMIDs - Direct quotes from abstracts to support key claims - Clear indication when information is not available or not applicable for this disease

This report will be used to populate a disease knowledge base entry with: - Pathophysiology descriptions with causal chains - Gene/protein annotations (HGNC, GO terms) - Phenotype associations (HP terms) with frequencies - Cell type involvement (CL terms) - Anatomical locations (UBERON terms) - Chemical entities (CHEBI terms) - Treatment annotations (MAXO terms) - Evidence items with PMIDs and exact abstract quotes - Epidemiology, prognosis, diagnostic, and prevention information - Animal model descriptions with phenotype recapitulation details

Comprehensive Research Report: Pentanucleotide Repeat Familial Adult Myoclonus Epilepsy (FAME/BAFME/FCMTE)

Executive summary

Pentanucleotide repeat familial adult myoclonus epilepsy (FAME), also widely reported as benign adult familial myoclonic epilepsy (BAFME) or familial cortical myoclonic tremor with epilepsy (FCMTE), is an autosomal dominant epilepsy/movement disorder characterized by a cortical tremor/cortical myoclonus phenotype and infrequent generalized seizures. The defining molecular etiology is a non-coding intronic pentanucleotide repeat expansion—typically an expanded (TTTTA)n tract with an inserted (TTTCA)n (or related motifs such as ATTTC or TTTGA) occurring in multiple unrelated genes, suggesting a gene-independent repeat-toxicity mechanism. Recent work (2024) expanded the list of causal loci to include RAI1 (BAFME8), emphasizing ongoing locus discovery and the diagnostic importance of long-read sequencing and repeat-primed PCR. (cuccurullo2023familialadultmyoclonus pages 1-2, corbett2023geneticsoffamilial pages 2-4, yeetong2024pentanucleotiderepeatinsertions pages 1-3)

1. Disease information

1.1 What is the disease?

FAME/BAFME/FCMTE is a rare, typically slowly progressive autosomal dominant disorder with a core phenotype of cortical tremor and cortical myoclonus and later-onset epileptic seizures. A 2023 review summarizes: “FAME is characterized by cortical tremor and myoclonus usually manifesting within the second decade of life, and infrequent seizures by the third or fourth decade.” (cuccurullo2023familialadultmyoclonus pages 1-2)

1.2 Synonyms and alternative names

Commonly used names/acronyms include: - Familial adult myoclonus epilepsy (FAME) (cuccurullo2023familialadultmyoclonus pages 1-2, uzun2023familialadultmyoclonic pages 1-2) - Benign adult familial myoclonic epilepsy (BAFME) (cuccurullo2023familialadultmyoclonus pages 1-2, depienne2023maagdenberg pages 1-3) - Familial cortical myoclonic tremor with epilepsy (FCMTE) (yeetong2024pentanucleotiderepeatinsertions pages 1-3, depienne2023maagdenberg pages 1-3) - Autosomal dominant cortical myoclonus and epilepsy (ADCME) (yeetong2024pentanucleotiderepeatinsertions pages 1-3) - Familial essential myoclonus and epilepsy (FEME) (cuccurullo2023familialadultmyoclonus pages 1-2, uzun2023familialadultmyoclonic pages 1-2)

1.3 Key identifiers (OMIM, Orphanet, ICD, MeSH, MONDO)

In the retrieved evidence, numeric identifiers (OMIM/Orphanet/MONDO/ICD/MeSH codes) were not accessible. However, multiple sources explicitly describe classic linkage loci corresponding to historical subtype nomenclature: - FAME1 (8q23.3–q24.1) - FAME2 (2p11.1–q12.1) - FAME3 (5p15.31–p15.1) - FAME4 (3q26.32–3q28) (cuccurullo2023familialadultmyoclonus pages 1-2)

1.4 Evidence source type

The current synthesis is derived primarily from aggregated disease-level resources (reviews and multi-family genetic studies) and also includes pedigree-based primary human studies (e.g., multi-generation families, segregation analyses). (cuccurullo2023familialadultmyoclonus pages 1-2, corbett2019intronicatttcrepeat pages 1-2, liu2020tttcarepeatexpansion pages 3-4)

2. Etiology

2.1 Disease causal factors (genetic/mechanistic)

FAME is a Mendelian disorder driven by intronic non-coding repeat expansions with common pathogenic motifs (TTTTA/TTTCA and related) inserted/expanded in multiple genes. A 2023 Cells review states: “the genetic mechanism underlying FAME consists of the expansion of similar non-coding pentanucleotide repeats, TTTCA and TTTTA, in different genes.” (cuccurullo2023familialadultmyoclonus pages 1-2)

Multiple lines of evidence support that the repeat itself is pathogenic and that simple loss-of-function of the host gene is unlikely: - STARD7 FAME2 study reports RNA-seq in patient fibroblasts showing no accumulation of repeat RNA and no reduction of STARD7 expression, supporting a repeat-driven mechanism rather than straightforward gene expression loss. (corbett2019intronicatttcrepeat pages 1-2) - RAI1 BAFME8 study reports leukocyte RAI1 RNA levels in affected individuals similar to controls and concludes “haploinsufficiency is unlikely to be the main pathomechanism of BAFME.” (yeetong2024pentanucleotiderepeatinsertions pages 1-3)

2.2 Risk factors

  • Genetic risk factor: autosomal dominant inheritance with pathogenic repeat expansions. (cuccurullo2023familialadultmyoclonus pages 1-2, peters2022familialadultmyoclonic pages 1-2)
  • Trigger/risk modifiers for seizures: photic stimulation, sleep deprivation, alcohol, and emotional stress are commonly reported triggers. (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6)

Environmental causal risk factors are not established in the available evidence.

2.3 Protective factors

No validated protective genetic or environmental factors were identified in the retrieved evidence.

2.4 Gene–environment interaction

No direct gene–environment interaction studies were identified in the retrieved evidence; however, seizures/myoclonus are often trigger-sensitive (photic stimulation, stress, alcohol, sleep deprivation), indicating that environmental exposures can modulate symptom expression in genetically affected individuals. (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6)

3. Phenotypes (clinical features)

3.1 Core phenotype

FAME is defined by cortical tremor and multifocal cortical myoclonus with distal predominance, often affecting hands/fingers and sometimes eyelids/face and lower limbs. (cuccurullo2023familialadultmyoclonus pages 4-6)

Seizures are typically less frequent than the movement phenotype; a 2023 review reports seizures can be infrequent, sometimes “5–10 episodes over a lifetime,” generally responsive to monotherapy. (cuccurullo2023familialadultmyoclonus pages 4-6)

3.2 Onset, progression, severity

  • Onset is often in the second decade, but broad ranges are reported (e.g., 10–60 years; 3–70 years). (uzun2023familialadultmyoclonic pages 1-2, peters2022familialadultmyoclonic pages 1-2)
  • Disease course is usually slowly progressive over decades. (peters2022familialadultmyoclonic pages 1-2, lagorio2019familialadultmyoclonic pages 2-3)
  • Functional impact: progressive worsening of tremor/myoclonus can impair fine motor skills (writing, buttoning), and in advanced age may affect gait; frequent falls can impair quality of life. (cuccurullo2023familialadultmyoclonus pages 4-6, lagorio2019familialadultmyoclonic pages 2-3, uzun2023familialadultmyoclonic pages 1-2)

3.3 Comorbidities (expanded phenotype)

Reported comorbidities across pedigrees include migraine, psychiatric symptoms (anxiety/depression/personality traits), subtle cerebellar signs (postural ataxia; downbeat nystagmus), rare night blindness, and cognitive impairment especially in older individuals. (cuccurullo2023familialadultmyoclonus pages 4-6, uzun2023familialadultmyoclonic pages 1-2)

3.4 Neurophysiologic hallmarks supporting cortical origin

Multiple sources support cortical hyperexcitability with quantitative markers: - EMG bursts ~15–60 ms (often ~50 ms). (peters2022familialadultmyoclonic pages 1-2, lagorio2019familialadultmyoclonic pages 2-3) - Giant somatosensory evoked potentials (SEPs), with thresholds reported as N20–P25 >8.6 µV or P25–N33 >8.4 µV. (cuccurullo2023familialadultmyoclonus pages 6-7) - Jerk-locked back averaging: cortical spikes preceding jerks (latency ≈20 ms hand; ≈30 ms leg). (cuccurullo2023familialadultmyoclonus pages 6-7)

3.5 Suggested HPO term mappings

A structured phenotype-to-HPO mapping based on the retrieved evidence is provided in the artifact table below.

Phenotype (plain language) Suggested HPO term(s) Typical onset Notes on frequency / severity / progression Key supporting evidence / statistics Supporting citations
Cortical tremor of hands/fingers, often tremor-like but irregular HP:0001337 Tremor; HP:0002342 Action tremor Usually 2nd decade; broader reported range 10–60 years or 3–70 years Core and often first symptom; distal upper limbs predominate; can involve proximal arms and face; slowly progressive and impairs fine motor tasks such as writing/buttoning; often mistaken for essential tremor but lacks true rhythmicity and responds poorly to beta-blockers Low-amplitude, continuous-arrhythmic finger movements; posture/action enhanced; may worsen with age; slow progression over decades; prevalence estimated <1/35,000 in reviews (uzun2023familialadultmyoclonic pages 1-2, peters2022familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6, lagorio2019familialadultmyoclonic pages 2-3)
Multifocal cortical myoclonus HP:0001336 Myoclonus; HP:0001251 Ataxia? Usually after or with tremor in adolescence/young adulthood; second to third decade typical Defining feature; multifocal jerks affect fingers, arms, axial muscles, eyelids, and legs; worsens gradually; can interfere with daily activities and occasionally gait in old age EMG bursts typically ~15–60 ms, commonly ~50 ms; high-frequency arrhythmic/semi-rhythmic jerks around ~10/s; synchronous agonist/antagonist activation; triggered by posture, movement, tendon tap, and sensory stimuli (peters2022familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6, lagorio2019familialadultmyoclonic pages 2-3, cuccurullo2023familialadultmyoclonus pages 6-7)
Generalized tonic-clonic seizures HP:0002069 Generalized tonic-clonic seizure Usually later than tremor/myoclonus, often 3rd–4th decade; adult onset common Seizures are often less frequent than myoclonus; usually responsive to monotherapy, but refractory or drug-resistant cases occur in some families Reported as relatively infrequent, ~5–10 lifetime episodes in review; in one Chinese pedigree all seizures were generalized tonic-clonic, 1–3/year, mean seizure onset 35 ± 5.52 years; GTCS frequency across families reported 15–100% in STARD7 paper summary (cuccurullo2023familialadultmyoclonus pages 4-6, liu2020tttcarepeatexpansion pages 3-4, corbett2019intronicatttcrepeat pages 1-2)
Myoclonic seizures / myoclonic clusters HP:0002123 Myoclonic seizure Usually after onset of cortical tremor/myoclonus Less common than cortical tremor; may precede bilateral tonic-clonic seizures and can cause falls in some patients Reviews note myoclonic clusters preceding convulsive seizures and photic-provoked myoclonic seizures with falls in some pedigrees (cuccurullo2023familialadultmyoclonus pages 4-6, cuccurullo2023familialadultmyoclonusa pages 4-6)
Photosensitivity / stimulus-sensitive attacks HP:0000613 Photophobia; HP:0007348 Increased susceptibility to photic-induced seizures Variable; usually after disease onset Common trigger-related feature rather than constant phenotype Triggers include photic stimulation, emotional stress, alcohol, and sleep deprivation; interictal generalized epileptiform discharges and photosensitivity may occur on EEG (uzun2023familialadultmyoclonic pages 1-2, peters2022familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6, cuccurullo2023familialadultmyoclonus pages 6-7)
Cerebellar signs (postural ataxia, eye movement abnormalities) HP:0001251 Ataxia; HP:0002418 Nystagmus; HP:0000648 Smooth pursuit pursuit interrupted? Usually later in disease course, often subtle Supportive but not universal; may emerge with progression, especially in older individuals Reported subtle cerebellar signs include postural ataxia, downbeat nystagmus, and impaired smooth pursuit; walking impairment may occur in very old age but patients generally are not bedridden (cuccurullo2023familialadultmyoclonus pages 4-6, cuccurullo2023familialadultmyoclonusa pages 4-6, lagorio2019familialadultmyoclonic pages 2-3)
Cognitive decline / memory-visuospatial impairment HP:0001268 Mental deterioration; HP:0002354 Memory impairment Usually late, especially older affected individuals Not universal; slow progression when present Reviews describe slow cognitive decline, visuospatial and memory deficits, and in some older patients slow-progressive dementia (cuccurullo2023familialadultmyoclonus pages 4-6, cuccurullo2023familialadultmyoclonusa pages 4-6, lagorio2019familialadultmyoclonic pages 2-3)
Psychiatric symptoms (anxiety, depression, personality changes) HP:0000739 Anxiety; HP:0000716 Depression Variable, often recognized during chronic disease Reported relatively frequently in some pedigrees; associated with poorer quality of life Anxiety, depression, and personality traits reported; myoclonus severity correlated with anxiety; psychiatric burden can worsen functional impact and QoL (cuccurullo2023familialadultmyoclonus pages 4-6, cuccurullo2023familialadultmyoclonusa pages 4-6, lagorio2019familialadultmyoclonic pages 2-3)
Migraine HP:0002076 Migraine Variable Comorbidity; not core diagnostic feature Reported in multiple pedigrees/reviews as part of expanded phenotype (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6, lagorio2019familialadultmyoclonic pages 2-3)
Night blindness / retinal dysfunction HP:0000662 Nyctalopia Variable, uncommon Rare associated phenotype Review notes rare night blindness and reduced ERG b-wave in some families (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6, cuccurullo2023familialadultmyoclonusa pages 4-6)
Falls / injury from myoclonus or seizures HP:0002527 Falls Later with progression or during provoked seizures Important quality-of-life impact Frequent falls can impair QoL; photic-induced myoclonic seizures may cause falls (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonusa pages 4-6)
EEG evidence of cortical hyperexcitability HP:0010848 Abnormal EEG Usually detectable after symptom onset; may evolve over years Supportive diagnostic biomarker EEG background may be normal early; later mild slowing occurs; generalized spike-wave frequency reported 4.3 ± 1.0 Hz; JLBA shows contralateral sensorimotor cortical spikes preceding jerks by ~20 ms in hand and ~30 ms in leg (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 1-2, cuccurullo2023familialadultmyoclonus pages 6-7)
Giant somatosensory evoked potentials (SEPs) HP:0033694 Abnormal somatosensory evoked potentials After symptom onset Classic electrophysiologic hallmark of cortical myoclonus Giant SEP thresholds reported as N20–P25 >8.6 µV or P25–N33 >8.4 µV; older review notes P25–N33 larger than 8.5–15 µV (cuccurullo2023familialadultmyoclonus pages 1-2, lagorio2019familialadultmyoclonic pages 2-3, cuccurullo2023familialadultmyoclonus pages 6-7)
Enhanced long-latency reflex / C-reflex HP:0034248 Abnormal long loop reflex? After symptom onset Supportive electrophysiologic sign of cortical origin Presence of long-latency reflex I (C reflex) at rest or enhanced long-latency reflexes repeatedly cited as supportive of cortical tremor/myoclonus (cuccurullo2023familialadultmyoclonus pages 1-2, lagorio2019familialadultmyoclonic pages 2-3, cuccurullo2023familialadultmyoclonus pages 6-7)

Table: This table summarizes the key clinical phenotypes and neurophysiologic hallmarks reported for pentanucleotide repeat familial adult myoclonus epilepsy (FAME/BAFME/FCMTE). It maps each phenotype to suggested HPO terms, typical onset, progression, quantitative supporting details, and the context citations available in this session.

4. Genetic / molecular information

4.1 Causal genes and repeat motifs

FAME is genetically heterogeneous at the locus/gene level but mechanistically convergent on similar repeat expansions. A 2023 Epilepsia review summarizes the discovery of “noncoding TTTTA and inserted TTTCA pentanucleotide repeat expansions within six different genes to date (SAMD12, STARD7, MARCHF6, YEATS2, TNRC6A, and RAPGEF2).” (corbett2023geneticsoffamilial pages 1-2)

A key 2024 development is the identification of RAI1 repeat insertions (BAFME8) in a Malian pedigree. (yeetong2024pentanucleotiderepeatinsertions pages 1-3)

A structured gene/motif/subtype table is provided here:

Subtype name(s) Locus / chromosome Gene Repeat motif configuration Inheritance Key supporting evidence Key citations
FAME1 / BAFME1 / FCMTE1 8q23.3–q24.1; intron 4 locus on chr8 SAMD12 Expanded TTTTA with inserted TTTCA; rare alternative pathogenic configurations include TTTGA-containing insertions in some pedigrees Autosomal dominant Japanese consortium identified expansions in 85 affected individuals from 49 families; expansions ranged ~2.2–18.4 kb and TTTCA was absent in 1000 controls; additional Chinese pedigree showed cosegregation in all 12 living affected members, with maternal anticipation in 6 mother/child pairs; >200 families overall now genetically confirmed across FAME genes (scheffer2018thekeyto pages 2-2, liu2020tttcarepeatexpansion pages 1-3, corbett2023geneticsoffamilial pages 2-4) Ishiura et al. 2018, Nat Genet, DOI: https://doi.org/10.1038/s41588-018-0067-2; Liu et al. 2020, Front Neurol, DOI: https://doi.org/10.3389/fneur.2020.00068; Corbett et al. 2023, Epilepsia, DOI: https://doi.org/10.1111/epi.17610
FAME2 / BAFME2 / ADCME 2p11.1–q12.1; chr2-linked locus STARD7 ATTTC expansion (reported with ATTTT/ATTTC context; review literature groups FAME motifs under TTTTA/TTTCA/ATTTC pentanucleotide expansions) Autosomal dominant ATTTC expansion in STARD7 segregated in 158/158 affected individuals from 22 pedigrees worldwide; RNA-seq from fibroblasts showed no reduction of STARD7 expression, supporting repeat-driven pathogenesis rather than simple loss of gene function (corbett2019intronicatttcrepeat pages 1-2, depienne2023maagdenberg pages 3-3) Corbett et al. 2019, Nat Commun, DOI: https://doi.org/10.1038/s41467-019-12671-y
FAME3 / BAFME3 / FCMTE3 5p15.31–p15.1; first intron on chr5 MARCHF6 (also written MARCH6/MARCHF6) 5′-(TTTTA)exp(TTTCA)exp-3′; unstable mixed TTTTA/TTTCA expansion Autosomal dominant Identified in 4 European families; nanopore sequencing and molecular combing showed average expansion sizes ~3.3–14 kb; family-level evidence included 24 affected in one pedigree (16 sampled), 14 affected in another (9 sampled), and marked somatic instability with nearby micro-rearrangements in ~20% of cells (florian2019unstablettttatttcaexpansions pages 1-2, florian2019unstablettttatttcaexpansions pages 10-10) Florian et al. 2019, Nat Commun, DOI: https://doi.org/10.1038/s41467-019-12763-9
FAME4 / BAFME4 3q26.32–3q28 YEATS2 Review evidence states pathogenic intronic pentanucleotide repeat expansions of the FAME type (TTTTA with inserted TTTCA) occur in YEATS2 Autosomal dominant 2023 review lists YEATS2 among the six confirmed genes harboring FAME-causing noncoding pentanucleotide repeat expansions; no segregation counts were provided in the available evidence excerpt (corbett2023geneticsoffamilial pages 1-2, yeetong2024pentanucleotiderepeatinsertions pages 1-3) Corbett et al. 2023, Epilepsia, DOI: https://doi.org/10.1111/epi.17610; Yeetong et al. 2024, Mov Disord, DOI: https://doi.org/10.1002/mds.29654
FAME6 / BAFME6 Not specified in available evidence excerpt TNRC6A Review evidence states pathogenic intronic pentanucleotide repeat expansions of the FAME type (TTTTA with inserted TTTCA); separate evidence notes nonpathogenic TTTTA expansion can occur at TNRC6A in some contexts Autosomal dominant Included among six confirmed FAME genes in 2023 review; available evidence excerpt does not provide family counts here, and one 2021 study noted associations between pathogenic SAMD12 TTTCA insertion and nonpathogenic TTTTA expansion in TNRC6A (corbett2023geneticsoffamilial pages 1-2) Corbett et al. 2023, Epilepsia, DOI: https://doi.org/10.1111/epi.17610
FAME7 / BAFME7 Intron 14 locus (chromosome not specified in available evidence excerpt) RAPGEF2 Review evidence states pathogenic intronic pentanucleotide repeat expansions of the FAME type (TTTTA with inserted TTTCA) Autosomal dominant Included among six confirmed FAME genes; notable because the expansion is reported in intron 14 rather than intron 1/4 as in most other loci; no segregation counts available in the provided evidence excerpt (corbett2023geneticsoffamilial pages 2-4, corbett2023geneticsoffamilial pages 1-2) Corbett et al. 2023, Epilepsia, DOI: https://doi.org/10.1111/epi.17610
FAME8 / BAFME8 Intron 4 of RAI1 RAI1 TTTTA repeat expansions with TTTCA repeat insertions Autosomal dominant Large Malian pedigree with 10 affected members; repeat changes in intron 4 of RAI1 co-segregated with disease; TTTCA repeats were absent in 200 Malian controls; somatic instability observed (yeetong2024pentanucleotiderepeatinsertions pages 1-3) Yeetong et al. 2024, Mov Disord, DOI: https://doi.org/10.1002/mds.29654
Variant motif pedigree within FAME1 spectrum SAMD12 intron 4 SAMD12 TTTGA insertion/expansion reported instead of TTTCA in at least one large Chinese pedigree; review notes pathogenic expansions can include two or more motifs such as TTTCA and TTTGA Autosomal dominant Available review evidence states a 5′-(TTTTA)exp(TTTGA)exp-3′ configuration segregated with FAME in a large Chinese pedigree; this is presented as a rare motif variant within SAMD12-associated disease (depienne2023maagdenberg pages 4-4, yeetong2024pentanucleotiderepeatinsertions pages 1-3) Yeetong et al. 2024, Mov Disord, DOI: https://doi.org/10.1002/mds.29654
Distinct non-pentanucleotide-repeat entity sometimes labeled BAFME5 (not part of pentanucleotide-repeat FAME group) Not specified in available evidence excerpt CNTN2 Homozygous frameshift variant; not a pentanucleotide repeat expansion Autosomal recessive 2024 review/evidence explicitly distinguishes BAFME5 as a recessive disorder caused by homozygous CNTN2 frameshift with adolescent-onset seizures then cortical myoclonus, unlike the dominant repeat-expansion forms above (yeetong2024pentanucleotiderepeatinsertions pages 1-3) Yeetong et al. 2024, Mov Disord, DOI: https://doi.org/10.1002/mds.29654

Table: This table summarizes the currently supported genetic etiologies for pentanucleotide-repeat familial adult myoclonus epilepsy syndromes, including subtype names, loci, genes, repeat configurations, inheritance, and supporting segregation evidence. It is useful for distinguishing confirmed repeat-expansion forms from related but genetically distinct entities.

4.2 Pathogenic variant class, allele size, instability, and anticipation

The pathogenic lesion is best conceptualized as a structural variant: intronic tandem repeat insertion/expansion.

Quantitative data from the retrieved evidence include: - SAMD12 (FAME1/BAFME1): expansions reported at 2.2–18.4 kb (≈440–3680 repeat units) in affected individuals; evidence of somatic instability; TTTCA absent in 1000 controls while TTTTA expansions present in 5.9% of controls. (scheffer2018thekeyto pages 2-2) - MARCHF6 (FAME3): average expansion sizes ~3.3–14 kb; high somatic instability and micro-rearrangements near expansions in ~20% of cells. (florian2019unstablettttatttcaexpansions pages 1-2) - STARD7 (FAME2): ATTTC expansions segregated in 158/158 affected individuals from 22 pedigrees. (corbett2019intronicatttcrepeat pages 1-2)

Anticipation/instability: - Repeat length inversely correlated with age at onset in SAMD12-linked disease and intergenerational instability consistent with anticipation has been described. (scheffer2018thekeyto pages 2-2) - A Chinese SAMD12 pedigree study reported clinical anticipation of tremor and seizures (average 14 years and 5 years, respectively) and molecular instability across transmissions; another Chinese pedigree also reported maternal anticipation. (liu2020tttcarepeatexpansion pages 3-4, liu2020tttcarepeatexpansion pages 1-3)

4.3 Modifier genes / epigenetics / chromosomal abnormalities

No specific modifier genes or epigenetic signatures were identified in the retrieved evidence. The expansion is frequently described as gene-independent in effect, though repeat length/configuration correlates with severity. (corbett2023geneticsoffamilial pages 1-2, depienne2023maagdenberg pages 4-4)

5. Environmental information

No established environmental causes are reported. However, symptom provocation by triggers (photic stimulation, alcohol, sleep deprivation, stress) is frequently described and is clinically relevant. (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6)

6. Mechanism / pathophysiology

6.1 Current mechanistic model (causal chain)

A convergent model supported by recent reviews and postmortem observations is: 1) Intronic pentanucleotide repeat insertion/expansion → 2) Transcription of repeat-containing RNA (UUUCA-containing RNAs in some subtypes) → 3) Formation of nuclear RNA foci and sequestration of RNA-binding proteins (RNA toxicity) → 4) Cerebellar pathology (including Purkinje cell loss in some pedigrees) and cerebello–thalamo–cortical network dysfunction → 5) Reduced sensorimotor cortical inhibition and cortical hyperexcitability → 6) Cortical tremor/cortical myoclonus and generalized seizures. (cuccurullo2023familialadultmyoclonus pages 9-10, cuccurullo2023familialadultmyoclonus pages 1-2)

6.2 RNA-mediated toxicity and cell types

Evidence from postmortem FAME1 brains shows RNA foci and repeats in both cortical neurons and cerebellar Purkinje cells, supporting involvement of these neuronal populations. (depienne2023maagdenberg pages 4-4)

Suggested cell type ontology (CL) terms (inferred from evidence mentioning these cell types): - Purkinje cell: CL:0000121 - Cortical neuron (broad): CL:0000540 (generic neuron) / cortical pyramidal neuron terms may apply depending on specificity

6.3 Cerebellar–thalamic–cortical loop dysfunction

A 2023 Cells review emphasizes imaging and neuropathology suggesting cerebellar alterations and abnormal cerebello-cerebral connectivity, motivating a hypothesis of decreased sensorimotor cortical inhibition through dysfunction of the cerebellar–thalamic–cortical loop. (cuccurullo2023familialadultmyoclonus pages 1-2, cuccurullo2023familialadultmyoclonus pages 9-10)

6.4 Phase separation and broader repeat-expansion biology

A broader 2022 pentanucleotide-repeat review notes that RNA foci formation in repeat disorders has been linked to phase separation and perturbation of nuclear membraneless organelles. (loureiro2022molecularmechanismsin pages 1-3)

6.5 RAN translation (expert interpretation)

Repeat-associated non-AUG (RAN) translation is discussed as a plausible pathogenic mechanism for repeat disorders and is explicitly raised as a possibility for FAME repeats, but is also noted as not yet demonstrated in FAME in the retrieved excerpt. (depienne2023maagdenberg pages 5-6)

6.6 Suggested GO terms (biological process and cellular component)

Based on the described mechanisms (RNA foci, neuronal dysfunction, altered inhibition/circuitry), plausible GO terms include: - GO:0003723 RNA binding (for sequestered RBPs; mechanistic context) (loureiro2022molecularmechanismsin pages 1-3) - GO:0010608 posttranscriptional regulation of gene expression (repeat-RNA effects) (loureiro2022molecularmechanismsin pages 1-3) - GO:0007611 learning or memory / GO:0007399 nervous system development (if pursuing cerebellar/cortical circuitry hypotheses) - Cellular component terms relevant to RNA foci: nuclear speck / nucleus (broad)

These GO terms are suggested as ontology anchors; direct GO-annotated experimental evidence was not retrieved in this session.

7. Anatomical structures affected

7.1 Organ/system level

Primary system: nervous system. Evidence highlights: - Sensorimotor cortex hyperexcitability (neurophysiology) (cuccurullo2023familialadultmyoclonus pages 6-7) - Cerebellar involvement, including Purkinje cell loss and abnormal connectivity (cuccurullo2023familialadultmyoclonus pages 9-10)

Suggested UBERON terms: - Cerebellum: UBERON:0002037 - Cerebral cortex: UBERON:0000956 - Thalamus: UBERON:0001898

7.2 Tissue/cell level

  • Neuronal populations in cortex and cerebellum (including Purkinje cells) implicated by RNA foci and neuropathology. (depienne2023maagdenberg pages 4-4, cuccurullo2023familialadultmyoclonus pages 9-10)

7.3 Subcellular level

  • Nucleus/nuclear RNA foci (repeat-RNA aggregates). (depienne2023maagdenberg pages 4-4, loureiro2022molecularmechanismsin pages 1-3)

8. Temporal development (natural history)

  • Onset: typically adolescence/young adulthood (second decade), but can vary broadly (3–70 reported). (cuccurullo2023familialadultmyoclonus pages 1-2, peters2022familialadultmyoclonic pages 1-2)
  • Course: slow progression over decades; worsening tremor/myoclonus, possible later ataxia/cognitive decline in some families. (cuccurullo2023familialadultmyoclonus pages 4-6, lagorio2019familialadultmyoclonic pages 2-3)
  • Anticipation: some pedigrees show clinical anticipation; repeat length/configuration correlates with earlier onset and greater severity. (liu2020tttcarepeatexpansion pages 3-4, corbett2023geneticsoffamilial pages 1-2)

9. Inheritance and population

9.1 Inheritance pattern

Autosomal dominant inheritance is repeatedly emphasized across reviews and primary genetic studies. (cuccurullo2023familialadultmyoclonus pages 1-2, corbett2019intronicatttcrepeat pages 1-2, liu2020tttcarepeatexpansion pages 1-3)

9.2 Penetrance and expressivity

Reviews describe high penetrance but with variable expressivity, including individuals with cortical tremor without epilepsy in some pedigrees. (cuccurullo2023familialadultmyoclonus pages 1-2, florian2019unstablettttatttcaexpansions pages 10-10)

9.3 Epidemiology and distribution

  • Prevalence is estimated as <1/35,000 in two independent reviews. (uzun2023familialadultmyoclonic pages 1-2, peters2022familialadultmyoclonic pages 1-2)
  • FAME occurs worldwide, with regional distributions by gene locus (e.g., SAMD12 predominating in Asian populations; FAME2/FAME3 more prominent in European cohorts in some summaries). (leitao2024identificationandcharacterization pages 3-6, corbett2023geneticsoffamilial pages 1-2)

9.4 Founder effects and repeat origin

A 2023 Epilepsia review reports founder-effect evidence and timing estimates: - FAME1 expansion estimated ~16,800 years old and predicted to have arrived in Japan ~4,300 years ago. (corbett2023geneticsoffamilial pages 2-4) - Founder effect evidence is reported for Italian FAME2 families. (corbett2023geneticsoffamilial pages 2-4)

10. Diagnostics

10.1 Clinical and electrophysiology

Diagnostic evaluation relies on recognition of cortical tremor/cortical myoclonus with supportive neurophysiology: - JLBA, corticomuscular coherence, giant SEPs, and long-latency reflexes/C-reflex support cortical origin. (cuccurullo2023familialadultmyoclonus pages 1-2, cuccurullo2023familialadultmyoclonus pages 6-7)

10.2 Genetic testing strategy (repeat expansion testing)

A modern diagnostic strategy is often multi-modal: 1) Clinical suspicion based on phenotype + electrophysiology (giant SEPs, JLBA). (cuccurullo2023familialadultmyoclonus pages 6-7) 2) Targeted repeat assays (repeat-primed PCR) for known motifs/loci. 3) Sequencing-based confirmation and characterization: - Short-read WGS + repeat callers (ExpansionHunter, exSTRa) for screening/outlier detection, acknowledging limitations for long or complex repeats. (corbett2019intronicatttcrepeat pages 6-6, leitao2024identificationandcharacterization pages 10-12) - Long-read sequencing (ONT/PacBio HiFi) with enrichment or whole-genome approaches to size repeats, resolve motif interruptions, and detect mosaicism. (leitao2024identificationandcharacterization pages 8-10, yeetong2024pentanucleotiderepeatinsertions pages 3-5)

A key real-world implementation point is that conventional WES may miss these intronic repeats. In a Chinese pedigree study: “Neither causal mutations cosegregated with the disease in the family nor any novel mutation was identified through WES, while an abnormal TTTCA expansion in SAMD12 was identified by RP-PCR and then proved to be cosegregated in the pedigree.” (liu2020tttcarepeatexpansion pages 1-3)

10.3 Methods landscape (2024 update)

A 2024 methods review (Revue Neurologique; Leitão et al., May 2024; https://doi.org/10.1016/j.neurol.2024.03.005) summarizes trade-offs: - RP-PCR: high-throughput screening but cannot accurately size expansions. (leitao2024identificationandcharacterization pages 8-10) - Fragment analysis: sizing up to ~700–800 bp. (leitao2024identificationandcharacterization pages 8-10) - Long-range PCR: amplifies ~10–15 kb with bias toward smaller alleles; useful when paired with long-read sequencing to resolve motif composition and mosaicism. (leitao2024identificationandcharacterization pages 8-10) - Southern blot: sizes large expansions but laborious, requires large DNA amounts, lacks sequence context. (leitao2024identificationandcharacterization pages 8-10) - Long-read sequencing: provides direct sizing and motif structure but requires high molecular weight DNA and sufficient coverage and is costlier. (leitao2024identificationandcharacterization pages 10-12)

10.4 Differential diagnosis (clinical)

FAME can be misdiagnosed as: - Essential tremor (phenotypic overlap), but FAME tremor lacks true rhythmicity and has cortical neurophysiology. (cuccurullo2023familialadultmyoclonus pages 4-6) - Juvenile myoclonic epilepsy and other myoclonic epilepsies; progressive myoclonic epilepsies. (uzun2023familialadultmyoclonic pages 1-2)

11. Outcome / prognosis

FAME is often described as “benign” historically, but multiple reviews emphasize slow progression and potential late complications: - Gradual worsening of tremor/myoclonus with impaired fine motor skills; possible late ataxia or cognitive decline in some families; rare drug-resistant epilepsy and status epilepticus have been described. (lagorio2019familialadultmyoclonic pages 2-3, uzun2023familialadultmyoclonic pages 1-2)

Robust survival statistics and standardized QoL instruments (EQ-5D/SF-36) were not identified in the retrieved evidence.

12. Treatment

12.1 Pharmacotherapy (symptomatic)

Evidence from reviews supports: - First-line anti-seizure medications: valproate, levetiracetam, and benzodiazepines for seizure and myoclonus control. (lagorio2019familialadultmyoclonic pages 2-3) - Some agents may worsen myoclonus or precipitate severe events: - Carbamazepine and gabapentin reported in association with convulsive/status epilepticus in BAFME/FAME. (cuccurullo2023familialadultmyoclonusa pages 16-16, lagorio2019familialadultmyoclonic pages 2-3) - Other symptomatic strategies: - A nationwide trial evaluated piracetam for myoclonus. (cuccurullo2023familialadultmyoclonusb pages 16-16) - Low-dose perampanel has been reported to improve refractory cortical myoclonus (review-cited). (cuccurullo2023familialadultmyoclonus pages 13-14)

Suggested MAXO terms (examples): - Anti-epileptic drug therapy (MAXO:0000747; approximate) - Benzodiazepine therapy (MAXO term selection depends on MAXO version) - Repetitive transcranial magnetic stimulation (rTMS) (MAXO neuromodulation term)

12.2 Neuromodulation

Low-frequency repetitive TMS over premotor cortex “can improve cortical tremor” (review-cited). (cuccurullo2023familialadultmyoclonusb pages 16-16)

12.3 Disease-modifying / experimental approaches

Because RNA-mediated toxicity is the leading hypothesis, RNA-targeting approaches (e.g., antisense oligonucleotides; RNA-targeting Cas9) are discussed as conceptual future directions, but no FAME-specific clinical trials were identified in the retrieved evidence. (cuccurullo2023familialadultmyoclonusb pages 16-16)

12.4 Real-world implementation

Seizures often diminish with anti-seizure medications but may not fully cease, as described in a large SAMD12 family followed longitudinally. (zhou2021clinicalandgenomic pages 1-5)

13. Prevention

Primary prevention is not currently feasible for a dominantly inherited repeat-expansion disorder.

Applicable prevention strategies include: - Genetic counseling and cascade testing in families once a pathogenic expansion is identified. (implied by autosomal dominant inheritance and repeat-based testing; (liu2020tttcarepeatexpansion pages 1-3)) - Trigger avoidance (sleep deprivation, photic stimulation, alcohol, stress) as a practical seizure prevention strategy. (uzun2023familialadultmyoclonic pages 1-2, cuccurullo2023familialadultmyoclonus pages 4-6)

14. Other species / natural disease

No naturally occurring veterinary analogs were identified in the retrieved evidence.

15. Model organisms

Direct model details were not retrievable in this session, but a 2023 mechanistic review notes that progress will require appropriate neuronal models and mentions animal models including mouse, Drosophila, and zebrafish as relevant platforms, and suggests iPSC-derived neurons for mechanistic study because peripheral tissues may not show repeat expression. (depienne2023maagdenberg pages 1-3)

Recent developments (2023–2024 emphasis)

  • Genetics synthesis (2023): comprehensive review of locus discovery, geographic distributions, instability, and diagnostic challenges. (Corbett et al., Apr 2023, Epilepsia; https://doi.org/10.1111/epi.17610) (corbett2023geneticsoffamilial pages 1-2)
  • Mechanistic synthesis (2023): cerebellar–thalamic–cortical loop hypothesis and RNA-toxicity framing in FAME. (Cuccurullo et al., Jun 2023, Cells; https://doi.org/10.3390/cells12121617) (cuccurullo2023familialadultmyoclonus pages 9-10)
  • New locus discovery (2024): RAI1 intronic TTTTA/TTTCA repeat insertions defining BAFME8 in an African pedigree. (Yeetong et al., Nov 2024, Movement Disorders; https://doi.org/10.1002/mds.29654) (yeetong2024pentanucleotiderepeatinsertions pages 1-3)
  • Diagnostics technology update (2024): modern methodological landscape for repeat expansion discovery/validation, emphasizing long-read sequencing and limitations of short-read methods. (Leitão et al., May 2024, Revue Neurologique; https://doi.org/10.1016/j.neurol.2024.03.005) (leitao2024identificationandcharacterization pages 8-10, leitao2024identificationandcharacterization pages 10-12)

Key verbatim evidence quotes (for knowledge-base curation)

"the genetic mechanism underlying FAME consists of the expansion of similar non-coding pentanucleotide repeats, TTTCA and TTTTA, in different genes" [source: pqac-00000000] (cuccurullo2023familialadultmyoclonus pages 1-2) "FAME is characterized by cortical tremor and myoclonus usually manifesting within the second decade of life, and infrequent seizures by the third or fourth decade." [source: pqac-00000000] (cuccurullo2023familialadultmyoclonus pages 1-2) "The ATTTC expansions segregate in 158/158 individuals typically affected by FAME from 22 pedigrees" [source: pqac-00000001] (corbett2019intronicatttcrepeat pages 1-2) "TTTTA repeat expansions and TTTCA repeat insertions in intron 4 of the RAI1gene that co-segregated with disease status in this family." [source: pqac-00000009] (yeetong2024pentanucleotiderepeatinsertions pages 1-3) "Neither causal mutations cosegregated with the disease in the family nor any novel mutation was identified through WES, while an abnormal TTTCA expansion in SAMD12 was identified by RP-PCR and then proved to be cosegregated in the pedigree." [source: pqac-00000024] (liu2020tttcarepeatexpansion pages 1-3) "Using PacBio HiFi long-read whole-genome sequencing and the tandem repeat genotyping tool TRGT, we identified a pathogenic MARCHF6 intronic expansion." [source: pqac-00000017] (florian2019unstablettttatttcaexpansions pages 1-2)

Blockquote: This artifact compiles verbatim quotes supporting the core genetics, phenotype, segregation evidence, recent RAI1 discovery, and modern diagnostic methods for pentanucleotide repeat familial adult myoclonus epilepsy.

Limitations of this report

  • Numeric ontology/database identifiers (OMIM/Orphanet/MONDO/ICD/MeSH) could not be retrieved with the available tooling and evidence set.
  • Some high-value 2023 Epilepsia review articles (neurophysiology, differential diagnosis, imaging/neuropathology, treatment options) were listed as unobtainable in the search results and thus could not be quoted directly.
  • No FAME-specific interventional clinical trials were identified via ClinicalTrials.gov search because “FAME” is widely used as an unrelated acronym in trials; repeat-expansion targeted therapies remain conceptual in the retrieved evidence.

References

  1. (cuccurullo2023familialadultmyoclonus pages 1-2): Claudia Cuccurullo, Pasquale Striano, and Antonietta Coppola. Familial adult myoclonus epilepsy: a non-coding repeat expansion disorder of cerebellar–thalamic–cortical loop. Cells, 12:1617, Jun 2023. URL: https://doi.org/10.3390/cells12121617, doi:10.3390/cells12121617. This article has 14 citations.

  2. (corbett2023geneticsoffamilial pages 2-4): Mark A. Corbett, Christel Depienne, Liana Veneziano, Karl Martin Klein, Francesco Brancati, Renzo Guerrini, Federico Zara, Shoji Tsuji, and Jozef Gecz. Genetics of familial adult myoclonus epilepsy: from linkage studies to noncoding repeat expansions. Epilepsia, Apr 2023. URL: https://doi.org/10.1111/epi.17610, doi:10.1111/epi.17610. This article has 26 citations and is from a domain leading peer-reviewed journal.

  3. (yeetong2024pentanucleotiderepeatinsertions pages 1-3): Patra Yeetong, Mohamed E. Dembélé, Monnat Pongpanich, Lassana Cissé, Chalurmpon Srichomthong, Alassane B. Maiga, Kékouta Dembélé, Adjima Assawapitaksakul, Salia Bamba, Abdoulaye Yalcouyé, Salimata Diarra, Samuel Ephrata Mefoung, Supphakorn Rakwongkhachon, Oumou Traoré, Siraprapa Tongkobpetch, Kenneth H. Fischbeck, William A. Gahl, Cheick O. Guinto, Vorasuk Shotelersuk, and Guida Landouré. Pentanucleotide repeat insertions in rai1 cause benign adult familial myoclonic epilepsy type 8. Movement Disorders, 39:164-172, Nov 2024. URL: https://doi.org/10.1002/mds.29654, doi:10.1002/mds.29654. This article has 26 citations and is from a highest quality peer-reviewed journal.

  4. (uzun2023familialadultmyoclonic pages 1-2): GÜNEŞ ALTIOKKA UZUN and BETÜL BAYKAN. Familial adult myoclonic epilepsy: clinical and genetic approach to an under-recognized disease. Noro psikiyatri arsivi, 60 2:174-177, Jan 2023. URL: https://doi.org/10.29399/npa.28252, doi:10.29399/npa.28252. This article has 3 citations.

  5. (depienne2023maagdenberg pages 1-3): C Depienne. Maagdenberg. Unknown journal, 2023.

  6. (corbett2019intronicatttcrepeat pages 1-2): Mark A. Corbett, Thessa Kroes, Liana Veneziano, Mark F. Bennett, Rahel Florian, Amy L. Schneider, Antonietta Coppola, Laura Licchetta, Silvana Franceschetti, Antonio Suppa, Aaron Wenger, Davide Mei, Manuela Pendziwiat, Sabine Kaya, Massimo Delledonne, Rachel Straussberg, Luciano Xumerle, Brigid Regan, Douglas Crompton, Anne-Fleur van Rootselaar, Anthony Correll, Rachael Catford, Francesca Bisulli, Shreyasee Chakraborty, Sara Baldassari, Paolo Tinuper, Kirston Barton, Shaun Carswell, Martin Smith, Alfredo Berardelli, Renee Carroll, Alison Gardner, Kathryn L. Friend, Ilan Blatt, Michele Iacomino, Carlo Di Bonaventura, Salvatore Striano, Julien Buratti, Boris Keren, Caroline Nava, Sylvie Forlani, Gabrielle Rudolf, Edouard Hirsch, Eric Leguern, Pierre Labauge, Simona Balestrini, Josemir W. Sander, Zaid Afawi, Ingo Helbig, Hiroyuki Ishiura, Shoji Tsuji, Sanjay M. Sisodiya, Giorgio Casari, Lynette G. Sadleir, Riaan van Coller, Marina A. J. Tijssen, Karl Martin Klein, Arn M. J. M. van den Maagdenberg, Federico Zara, Renzo Guerrini, Samuel F. Berkovic, Tommaso Pippucci, Laura Canafoglia, Melanie Bahlo, Pasquale Striano, Ingrid E. Scheffer, Francesco Brancati, Christel Depienne, and Jozef Gecz. Intronic atttc repeat expansions in stard7 in familial adult myoclonic epilepsy linked to chromosome 2. Nature Communications, Oct 2019. URL: https://doi.org/10.1038/s41467-019-12671-y, doi:10.1038/s41467-019-12671-y. This article has 167 citations and is from a highest quality peer-reviewed journal.

  7. (liu2020tttcarepeatexpansion pages 3-4): Chaorong Liu, Yanmin Song, Ying Yuan, Ying Peng, Nan Pang, Ranhui Duan, Wen Huang, Xuehui Qin, Wenbiao Xiao, Hongyu Long, Sha Huang, Pinting Zhou, Lili Long, and Bo Xiao. Tttca repeat expansion of samd12 in a new benign adult familial myoclonic epilepsy pedigree. Frontiers in Neurology, Feb 2020. URL: https://doi.org/10.3389/fneur.2020.00068, doi:10.3389/fneur.2020.00068. This article has 10 citations and is from a peer-reviewed journal.

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Executive Summary

Executive Summary

Familial Adult Myoclonus Epilepsy (FAME) is an autosomal dominant neurological disorder caused by intronic pentanucleotide repeat expansions of TTTCA inserted within polymorphic TTTTA repeats. The identical repeat motif has been identified in seven functionally unrelated genes (SAMD12, STARD7, MARCHF6, YEATS2, TNRC6A, RAPGEF2, and RAI1), establishing FAME as a unique "repeat motif disease" in which the pathogenic mechanism is entirely independent of the host gene's function. The disease is characterized by cortical tremor beginning in the second decade of life, followed by infrequent generalized tonic-clonic seizures by the third to fourth decade. Recent mechanistic studies have identified RNA toxicity — specifically, sequestration of the neuron-specific splicing regulator NOVA2 by UUUCA RNA foci — as the primary pathomechanism, linking FAME to aberrant alternative splicing of critical ion channels and synaptic genes. Despite growing molecular understanding, FAME remains significantly underdiagnosed due to phenotypic overlap with common conditions and the requirement for specialized long-read sequencing for genetic confirmation.


1. Disease Identity and Classification

1.1 Nomenclature

FAME has been described under multiple names in the literature, reflecting its independent discovery by different research groups:

Acronym Full Name Origin
FAME Familial Adult Myoclonus Epilepsy International consensus
BAFME Benign Adult Familial Myoclonic Epilepsy Japan
FCMTE Familial Cortical Myoclonic Tremor with Epilepsy China, Europe
FEME Familial Essential Myoclonus and Epilepsy Italy
ADCME Autosomal Dominant Cortical Myoclonus and Epilepsy Various

1.2 Disease Identifiers

  • MONDO ID: MONDO:0000160 (epilepsy, familial adult myoclonic)
  • Orphanet: ORPHA:86814 (Familial adult myoclonic epilepsy)
  • OMIM: Multiple entries by subtype (see Section 3)
  • Category: Mendelian, autosomal dominant
  • ILAE Classification: Not yet recognized as a distinct epilepsy syndrome

1.3 Inheritance

  • Pattern: Autosomal dominant with high penetrance
  • Genetic anticipation: Present — earlier onset and increased severity in successive generations, particularly with maternal transmission
  • De novo mutations: Not commonly reported; most cases arise within families

2. Clinical Features

2.1 Core Phenotype

FAME presents with a distinctive two-phase clinical course:

Phase 1 — Cortical Tremor (onset: ~2nd decade) - Tremulous, involuntary finger movements — the earliest and most consistent symptom - Fine, irregular, action-induced tremor affecting the distal upper extremities - Cortical origin confirmed by neurophysiological studies (see Section 5) - Often initially misdiagnosed as essential tremor

Phase 2 — Epileptic Seizures (onset: ~3rd–4th decade) - Mean seizure onset age: 36.5 ± 9.0 years (approximately 6.9 years after tremor onset) - Predominant seizure type: generalized tonic-clonic seizures (GTCS) - Seizure frequency: rare (<1/year in 58.8%) or occasional (1–6/year in 37.1%) - Prolonged prodromes reported in 57.7% of patients - Myoclonic seizures also occur

2.2 Additional Clinical Features

Feature Frequency Notes
Cortical tremor ~100% Core feature, always present
Epileptic seizures 77.6% Not all affected individuals develop seizures
Interictal epileptiform discharges 69.1% On routine EEG
Prolonged seizure prodromes 57.7% Characteristic of FAME
Photosensitivity 24.8% Photoparoxysmal response in 79.5% of tested
Cognitive decline Variable Reported in some subtypes
Migraine Variable Described as additional feature
Night blindness Rare Reported in some families

2.3 Disease Course

  • Generally benign and non-progressive — this distinguishes FAME from progressive myoclonus epilepsies (PMEs)
  • Cortical tremor may slowly worsen over decades
  • Seizures are typically well-controlled with antiseizure medications
  • Quality of life can be significantly affected by persistent myoclonus/tremor
  • Some families report mild cognitive decline in later life

2.4 Phenotypic Variability

  • Significant intra-familial and inter-familial clinical heterogeneity
  • Age of onset, seizure severity, and additional symptoms vary
  • Variability may be driven by: TTTCA repeat count, repeat configuration, somatic mosaicism, and modifying genetic factors

3. Genetics

3.1 The FAME Repeat Expansion

All FAME subtypes share the same fundamental mutation: insertion of pathogenic (TTTCA) repeats within an expanded (TTTTA) repeat tract in an intron of the affected gene. The general structure is:

Normal allele:    ...(TTTTA)₅₋₃₀...        (polymorphic, benign)
FAME allele:      ...(TTTTA)exp(TTTCA)exp... (pathogenic)
  • TTTTA expansion alone is polymorphic and non-pathogenic
  • TTTCA insertion is the pathogenic event
  • Total repeat counts average ~848 ± 152 units (TTTTA: ~498 ± 196; TTTCA: ~356 ± 110)
  • TTTGA interruptions are sometimes observed

3.2 FAME Subtypes

Subtype Gene Locus OMIM Ensembl Geographic Distribution Year Identified
FAME1 SAMD12 8q24.11-q24.12 601068 ENSG00000177570 Japan, China, Europe 2018
FAME2 STARD7 2p11.1-q12.2 607876 ENSG00000084090 Europe (Italy) 2019
FAME3 MARCHF6 5p15.31-p15.1 613608 ENSG00000145495 Europe 2019
FAME4 YEATS2 3q26.32-3q28 615127 ENSG00000163872 Asia 2019
FAME6 TNRC6A 16p11.2 618074 ENSG00000090905 Japan 2018
FAME7 RAPGEF2 4q32.1 618075 ENSG00000109756 Japan 2018
FAME8 RAI1 17p11.2 ENSG00000108557 Africa (Mali) 2024

3.3 Gene Functions (Not Relevant to FAME Pathogenesis)

The seven FAME genes encode proteins with entirely different functions, underscoring the gene-independent nature of the disease:

Gene Protein Function
SAMD12 Sterile alpha motif domain protein; predicted role in receptor tyrosine kinase signaling
STARD7 Lipid transfer protein; protective role in mucosal tissues
MARCHF6 Poly-ADP-ribosylation regulator; DNA repair
YEATS2 Chromatin reader; histone acetyltransferase complex component
TNRC6A RNA silencing; required for miRNA/siRNA-mediated repression
RAPGEF2 Guanine nucleotide exchange factor; Rap/Ras GTPase activation
RAI1 Transcriptional regulator of circadian clock components

Critical insight: FAME expansions do NOT alter the expression of their host genes. The pathomechanism is entirely repeat-dependent, not gene-dependent.

3.4 Genotype-Phenotype Correlations

The TTTCA repeat count is the primary driver of phenotypic severity:

  • TTTCA count inversely correlates with age at onset for cortical tremor (Spearman's ρ = −0.348, P = 0.005)
  • TTTCA count inversely correlates with age at onset for epilepsy (Spearman's ρ = −0.424, P = 0.003)
  • Higher TTTCA counts are associated with more severe seizure patterns (OR = 0.988, 95% CI: 0.980–0.995, P = 0.002)
  • TTTCA counts increase significantly during parental transmission (P = 0.007), with maternal transmission showing larger increases

3.5 Repeat Instability and Anticipation

  • Somatic instability: Extreme — TTTCA repeat sizes ranging from 10 to 647 within affected members of a single family
  • Intergenerational instability: Repeat counts tend to increase across generations (especially maternal transmission)
  • Genetic anticipation: Successive generations show earlier onset and potentially more severe disease
  • Evolutionary origin: Pathogenic (TTTTA)exp(TTTCA)exp alleles arise from non-pathogenic (TTTTA)exp alleles through rare TTTCA insertion events, likely via DNA replication slippage

3.6 Geographic Distribution

FAME subtypes show regional geographic clustering reflecting founder effects: - East Asia (Japan, China): FAME1 (SAMD12) predominates, along with FAME4, FAME6, FAME7 - Europe (Italy, France, Germany): FAME2 (STARD7) and FAME3 (MARCHF6) predominate - Africa (Mali): FAME8 (RAI1) — first FAME type identified on the African continent - FAME almost certainly exists globally but is vastly underdiagnosed outside specialized centers


4. Pathophysiology

4.1 RNA Toxicity: The Primary Mechanism

The most compelling evidence supports an RNA gain-of-function toxicity model:

  1. Transcription of expanded TTTCA repeats produces UUUCA-containing RNA
  2. RNA foci formation: UUUCA RNA aggregates into nuclear foci in neurons
  3. NOVA2 sequestration: The neuron-specific splicing regulator NOVA2 is identified as the key RNA-binding protein that interacts with UUUCA RNA foci
  4. NOVA2 redistribution: UUUCA RNA disrupts the normal nuclear distribution of NOVA2
  5. Bidirectional relationship: NOVA2 knockdown promotes RNA foci formation, creating a toxic feedback loop
  6. Alternative splicing disruption: Shared synaptic-related splicing events are altered in both FAME patient iPSC-neurons and NOVA2 target genes

4.2 What Has Been Ruled Out

  • Gene loss-of-function: FAME expansions do NOT alter host gene expression
  • RAN translation: No repeat-associated non-AUG translation peptides detected in FAME
  • Haploinsufficiency: RAI1 expression levels unchanged in FAME8 patients (despite RAI1 haploinsufficiency causing Smith-Magenis syndrome)

4.3 NOVA2 and the Epilepsy Connection

NOVA2 is a master regulator of neuronal alternative splicing. Protein interaction network analysis (STRING database) reveals high-confidence connections between NOVA2 and critical epilepsy-related genes:

NOVA2 Target Score Function Disease Relevance
SCN1A 0.700 Nav1.1 voltage-gated sodium channel Dravet syndrome gene
SCN1B / SCN2B 0.503/0.541 Sodium channel beta subunits Epilepsy genes
GABRG2 0.589 GABA-A receptor gamma-2 subunit Genetic epilepsy gene
KCNF1 0.708 Potassium channel subunit Neuronal repolarization
KCNG1 0.628 Potassium channel subunit Neuronal repolarization
GLRA2 0.610 Glycine receptor alpha-2 Inhibitory neurotransmission
RBFOX1 0.692 Splicing regulator Epilepsy susceptibility gene
FMR1 0.602 RNA-binding protein Fragile X syndrome

Mechanistic model: NOVA2 sequestration by UUUCA RNA foci → aberrant splicing of ion channels (SCN1A, KCNF1) and neurotransmitter receptors (GABRG2, GLRA2) → disrupted excitation/inhibition balance → cortical hyperexcitability → tremor and seizures.

NOVA2 expression is highest in the cortex (NOVA1 predominates in cerebellum), explaining the preferential cortical involvement in FAME.

4.4 Circuit-Level Pathophysiology

FAME involves dysfunction of the cerebellar-thalamic-cortical loop:

  • Cortical hyperexcitability: Confirmed by giant SEPs, enhanced C-reflex, jerk-locked back averaging
  • Cerebellar involvement: Neuroimaging and postmortem studies show cerebellar alterations
  • Abnormal connectivity: Disrupted functional connectivity between cerebellum and cerebral cortex
  • Network disorder: TMS studies reveal altered inhibitory circuits in primary somatosensory cortex and subcortical networks
  • Occipital predominance: Interictal epileptiform discharges are occipitally dominant in 72.7% of generalized IEDs
  • Sleep-wake paradox: Higher IED index during wakefulness (0.82 ± 0.88/min) vs. NREM sleep (0.04 ± 0.06/min)

4.5 Comparison with SCA37: Same Repeat, Different Mechanism

Spinocerebellar ataxia type 37 (SCA37) is caused by an ATTTC repeat insertion in an Alu element within DAB1 — a nearly identical repeat motif to FAME's TTTCA. However, SCA37 uses a gene-dependent mechanism: the repeat insertion hyperactivates a neurodevelopmental DAB1 enhancer, leading to DAB1 overexpression and abnormal axonal pathfinding. This contrast demonstrates that genomic context determines pathomechanism: the same repeat motif can cause disease via RNA toxicity (FAME) or gene dysregulation (SCA37) depending on its location relative to regulatory elements.


5. Diagnosis

5.1 Clinical Diagnosis

Diagnostic clues: - Adult-onset tremulous finger movements with cortical electrophysiological signature - Family history consistent with autosomal dominant inheritance - Late-onset, infrequent GTCS - Photosensitivity - Benign, non-progressive course (distinguishes from PMEs)

Neurophysiological workup: - EEG: Generalized and/or focal interictal epileptiform discharges; occipitally dominant - Somatosensory evoked potentials (SEPs): Giant cortical potentials (enlarged N20-P25) - Long-latency reflex (C-reflex): Enhanced/present at rest - Jerk-locked back averaging (JLBA): Cortical correlate preceding myoclonus - Corticomuscular coherence analysis: Confirms cortical origin

5.2 Molecular Diagnosis

Critical limitation: Standard genetic testing (Sanger sequencing, short-read NGS, exome sequencing, gene panels) CANNOT detect FAME repeat expansions.

Screening: - Repeat-primed PCR (RP-PCR) targeting known FAME loci - Limitation: may miss atypical configurations or very short expansions

Confirmatory: - Long-read sequencing is the gold standard: - Oxford Nanopore Technology (ONT) with CRISPR-Cas9 enrichment - PacBio HiFi targeted sequencing - Resolves repeat length, motif composition, interruptions, and somatic mosaicism - First targeted clinical diagnostic panel covering all 7 FAME loci developed in 2025 - First commercial clinical long-read diagnosis of FAME3 achieved in 2025

5.3 Differential Diagnosis

Condition Key Distinguishing Features
Essential tremor No cortical electrophysiological signature; no epilepsy; different tremor characteristics
Juvenile myoclonic epilepsy (JME) Earlier seizure onset; different EEG pattern; no cortical tremor
Progressive myoclonus epilepsies (PMEs) Progressive course with cognitive decline; distinct genetic causes
Unverricht-Lundborg disease Progressive; onset in childhood/adolescence; CSTB mutations
Drug-induced tremor Medication history; resolves with drug discontinuation
Sialidosis (late-onset) Progressive; cherry-red macular spot; NEU1 mutations

5.4 Underdiagnosis

FAME is significantly underdiagnosed due to: 1. Phenotypic overlap with common conditions (essential tremor, JME) 2. Lack of ILAE classification as a distinct syndrome 3. Requirement for specialized long-read sequencing not available in most clinical labs 4. Low awareness among general neurologists and epileptologists 5. Geographic concentration of expertise in Japan and Europe


6. Treatment and Management

6.1 Current Symptomatic Treatment

No disease-modifying therapy exists. Current management is symptomatic:

Treatment Target Evidence Level
Perampanel (AMPA antagonist) Myoclonus, cortical tremor Best evidence: UMRS total scores reduced (p = 0.001), action-myoclonus subscores reduced (p = 0.002); reduces sensorimotor hyperexcitability
Valproate Seizure control Standard antiseizure medication
Clonazepam Myoclonus GABAergic; may improve tremor
Levetiracetam Seizure control Commonly used
Piracetam Cortical myoclonus Adjunctive

Perampanel is the most evidence-based treatment, with demonstrated reduction in both clinical symptoms and neurophysiological markers of cortical hyperexcitability (decreased N33 amplitudes, attenuated glutamatergic facilitation, enhanced GABAergic inhibition).

6.2 Emerging Approaches

  • Thalamic VIM-DBS (Deep Brain Stimulation): First registered interventional clinical trial for FAME (NCT06593444, not yet recruiting). Targets the ventral intermediate nucleus of the thalamus in refractory cases.
  • Repetitive TMS / tDCS: Proposed as potential therapeutic tools targeting cerebellar-cortical circuits, though no formal trials yet.

6.3 Future Disease-Modifying Targets

Based on the RNA toxicity mechanism, several rational therapeutic strategies emerge:

  1. Antisense oligonucleotides (ASOs) targeting UUUCA repeat RNA for degradation — analogous to strategies in myotonic dystrophy type 1 and C9orf72-ALS/FTD
  2. Small molecules disrupting RNA foci formation or preventing NOVA2-RNA interaction
  3. NOVA2 pathway restoration — modulating downstream splicing targets
  4. CRISPR-based approaches — direct deletion or contraction of repeat expansions
  5. iPSC-neuron drug screening platforms — leveraging patient-derived cellular models for compound identification

6.4 Key Unmet Needs

  • No disease-modifying therapy
  • No validated biomarkers for disease progression or treatment response
  • Very limited clinical trial activity
  • Diagnosis requires specialized genetic testing not available in most clinical labs
  • No formal natural history study or patient registry

7. Key Mechanistic Insights

7.1 Supported Hypotheses

  1. FAME is a repeat motif-dependent disease — the identical TTTCA expansion in seven unrelated genes causes the same phenotype, proving the pathomechanism is repeat-driven, not gene-driven
  2. RNA toxicity via NOVA2 sequestration is the primary mechanism — UUUCA RNA foci trap NOVA2, disrupting splicing of synaptic genes
  3. TTTCA repeat count drives severity — inverse correlation with onset age, dose-dependent toxicity model
  4. Cerebellar-thalamic-cortical circuit dysfunction — not isolated cortical pathology; the cerebellum is a key node
  5. Excitation/inhibition imbalance — perampanel's efficacy confirms glutamatergic excess as an effector

7.2 Refuted Hypotheses

  1. Gene loss-of-function — host gene expression is NOT altered in FAME
  2. RAN translation — no repeat polypeptides detected (unlike C9orf72-ALS/FTD)
  3. Haploinsufficiency — RAI1 levels normal in FAME8 (despite RAI1 haploinsufficiency causing Smith-Magenis syndrome)

7.3 Outstanding Questions

  1. Why does the same TTTCA repeat cause FAME but not SCA37 (where ATTTC in DAB1 causes cerebellar ataxia via enhancer hyperactivation)?
  2. What factors determine which of the seven genes acquires the TTTCA insertion in different populations?
  3. Is there a minimum pathogenic TTTCA repeat length? (Affected individuals with as few as 9 TTTCA repeats have been reported)
  4. Can UUUCA RNA foci or aberrant splicing patterns serve as biomarkers?
  5. Why is FAME generally benign/non-progressive while other RNA foci diseases (e.g., DM1) are progressive?

8. Figures

The following figures were generated during this investigation:

  1. FAME Genetic Subtypes and Pathomechanism Pathway — Overview of all 7 subtypes and step-by-step RNA toxicity mechanism
  2. Genotype-Phenotype Correlation and Clinical Features — TTTCA count vs. onset age; frequency of clinical features
  3. Comprehensive Disease Overview Infographic — All key disease characteristics in one view
  4. NOVA2 Protein Interaction Network — STRING database network showing epilepsy gene connections
  5. Geographic Distribution and Disorder Comparison — Regional clustering of subtypes; FAME vs. related repeat diseases
  6. Diagnostic and Therapeutic Landscape — Clinical pathway from suspicion to confirmation; treatment options

9. Limitations

  1. No experimental data analyzed: This characterization is literature-based; no primary data files were available
  2. NOVA2 network analysis is correlational: STRING interactions suggest but don't prove that NOVA2 disruption alters splicing of specific epilepsy genes in FAME
  3. Limited epidemiological data: True prevalence unknown; no formal natural history studies exist
  4. Publication bias: Most literature from East Asian and European centers; other populations underrepresented
  5. Rapid-evolving field: New FAME loci and mechanistic insights continue to emerge

10. References (Key Papers)

  1. Ishiura H, et al. (2018) Expansions of intronic TTTCA and TTTTA repeats in benign adult familial myoclonic epilepsy. Nat Genet. PMID: 29507423
  2. Corbett MA, et al. (2023) Genetics of familial adult myoclonus epilepsy: From linkage studies to noncoding repeat expansions. Epilepsia. PMID: 37021642
  3. Chen L, et al. (2025) (TTTCA)exp Drives the Genotype-Phenotype Correlation and Genetic Anticipation in FCMTE1. PMID: 39569876
  4. Zhang Y, et al. (2026) RNA Toxicity and Interacting RNA-Binding Protein NOVA2 of (UUUCA)exp RNA Foci in Familial Cortical Myoclonic Tremor with Epilepsy. PMID: 41850906
  5. Ding J, et al. (2024) Seizures and electrophysiological features in familial cortical myoclonic tremor with epilepsy 1. PMID: 38059543
  6. Cuccurullo E, et al. (2023) Familial adult myoclonus epilepsy: A non-coding repeat expansion disorder of cerebellar-thalamic-cortical loop. PMID: 37371086
  7. Yeetong P, et al. (2024) Pentanucleotide repeat insertions in RAI1 cause benign adult familial myoclonic epilepsy type 8. PMID: 37994247
  8. Coppola A, et al. (2025) Clinical efficacy of low-dose Perampanel correlates with neurophysiological changes in FAME2. PMID: 39533755
  9. Urabe T, et al. (2025) Targeted nanopore long-read sequencing panel for the molecular diagnosis of FAME. PMID: 41219789
  10. Chen J, et al. (2025) Origin and evolution of pentanucleotide repeat expansions at the FCMTE1-SAMD12 locus. PMID: 38467733
  11. Baykan B, et al. (2023) Differential diagnosis of familial adult myoclonic epilepsy. PMID: 36751956
  12. Uzun A, et al. (2023) Familial adult myoclonic epilepsy: Clinical and genetic approach to an under-recognized disease. PMID: 37287551
  13. Depienne C, et al. (2023) Insights into FAME pathogenesis: How the same repeat expansion in six unrelated genes may lead to cortical excitability. PMID: 36622139
  14. Meldolesi J (2020) Alternative splicing by NOVA factors. PMID: 32486302
  15. Saito Y, et al. (2019) Differential NOVA2-mediated splicing in excitatory and inhibitory neurons. PMID: 30638744
  16. Loureiro JR, et al. (2026) ATTTC repeat insertion in Alu element hyperactivates a neurodevelopmental enhancer in SCA37. PMID: 41871099
  17. Zeng Y, et al. (2025) Phenotypic and genotypic characterization of FAME in a Chinese case series. PMID: 40503331
  18. Perera D, et al. (2025) First clinical diagnosis of FAME3 via commercial long-read sequencing. PMID: 40788430

Report generated by autonomous scientific discovery agent. Investigation conducted across 3 iterations with 12 confirmed findings based on review of ~30 published papers, database queries (NCBI, UniProt, STRING, ClinicalTrials.gov, Wikidata), and computational network analysis.