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1
Inheritance
4
Pathophys.
4
Histopath.
4
Phenotypes
7
Pathograph
3
Genes
3
Treatments
2
Differentials
1
Deep Research
👪

Inheritance

1
Autosomal Dominant
Carney-Stratakis syndrome is inherited in an autosomal dominant manner with incomplete penetrance; mutation-positive relatives may be clinically unaffected.
Show evidence (2 references)
PMID:31174229 SUPPORT Human Clinical
"CSS has autosomal dominant inheritance, incomplete penetrance, and greater relative frequency of PGL over GISTs."
Review abstract explicitly states the inheritance pattern and incomplete penetrance.
PMID:34012423 SUPPORT Human Clinical
"CSS is also known as the dyad of GIST and PGL; it affects both genders equally and is inherited in an autosomal dominant manner with incomplete penetrance."
SDH-deficiency review confirms equal sex involvement and autosomal dominant inheritance with incomplete penetrance.

Pathophysiology

4
Germline SDH complex loss of function
Heterozygous germline pathogenic variants in SDHB, SDHC, or SDHD predispose to SDH-deficient tumors. Tumor suppressor behavior is supported by loss of function of the remaining allele in affected GIST tissue.
SDHB link SDHC link SDHD link
mitochondrial electron transport, succinate to ubiquinone link ↓ DECREASED tricarboxylic acid cycle link ↓ DECREASED
Show evidence (2 references)
PMID:17667967 SUPPORT Human Clinical
"We investigated 11 patients with the dyad of 'paraganglioma and gastric stromal sarcoma'; in eight (from seven unrelated families), the GISTs were caused by germline mutations of the genes encoding subunits B, C, or D (the SDHB, SDHC and SDHD genes, respectively)."
Landmark molecular series identifies germline SDHB, SDHC, and SDHD variants as causes of the Carney-Stratakis dyad.
PMID:34012423 SUPPORT Human Clinical
"CSS is caused by inactivating germline mutations in genes encoding for the SDH subunits, while CT is mostly caused by a specific pattern of methylation of the SDHC gene and may be due to germline mosaicism of the responsible genetic defect."
Review distinguishes germline SDH-subunit inactivation in Carney-Stratakis syndrome from Carney triad.
Succinate accumulation and pseudohypoxia
Loss of SDH activity causes succinate accumulation. Succinate inhibits alpha-ketoglutarate-dependent prolyl hydroxylases, stabilizing HIF signaling under normoxic conditions and increasing angiogenic, glycolytic, and proliferative transcriptional programs.
cellular response to hypoxia link ↑ INCREASED cell population proliferation link ↑ INCREASED
Show evidence (2 references)
PMID:31773431 SUPPORT Human Clinical
"SDH deficiency leads to accumulation of succinate, an oncometabolite that promotes tumorigenesis."
Management review directly links SDH deficiency to succinate accumulation and tumorigenesis.
PMID:34012423 SUPPORT Human Clinical
"This mechanism implies that due to SDH deficiency, succinate is accumulated; this inhibits propyl hydroxylases (PHDs) resulting in induction of the hypoxic response despite normoxic conditions (pseudohypoxia)"
Review explains the succinate-to-pseudohypoxia mechanism underlying SDH-deficient tumor biology.
Epigenetic dysregulation
Succinate accumulation inhibits alpha-ketoglutarate-dependent dioxygenases, including JmjC-domain histone demethylases, producing hypermethylation and altered differentiation programs in SDH-deficient tumors.
chromatin organization link ↕ DYSREGULATED
Show evidence (1 reference)
PMID:34012423 SUPPORT Human Clinical
"this acts as an alpha-ketoglutarate competitor, inhibiting a-KG-dependent dioxygenases, JIp1, which is involved in sulfur metabolism and Jhd1 which belongs to the JmjC-domain-containing histone demethylase (JHDM) enzymes."
Review supports the dioxygenase-inhibition branch of SDH-deficient tumor pathogenesis.
Multifocal SDH-deficient tumor development
SDH-deficient tumor biology predisposes to multifocal gastric GIST and multicentric paraganglioma or pheochromocytoma. GISTs are usually KIT/PDGFRA-wildtype, often gastric, and show loss of SDHB protein by immunohistochemistry.
chromaffin cell link
Show evidence (2 references)
PMID:31174229 SUPPORT Human Clinical
"The PGLs in CSS are multicentric and GISTs are multifocal in all the patients, suggesting an inherited susceptibility and associating the two manifestations."
Review supports multicentric paraganglioma and multifocal GIST as core Carney-Stratakis tumor behavior.
PMID:21997692 SUPPORT Human Clinical
"SDH-deficient GISTs especially include pediatric GISTs and those associated with Carney triad (CT) or Carney-Stratakis syndromes (CSSs); the latter 2 also include paraganglioma as a component."
Clinicopathologic series places Carney-Stratakis GISTs in the broader SDH-deficient GIST class and notes paraganglioma as the associated tumor component.

Histopathology

4
SDHB-negative gastric epithelioid GIST
Carney-Stratakis-associated GISTs are SDH-deficient gastric tumors with loss of SDHB immunostaining, epithelioid morphology, and absence of KIT or PDGFRA driver mutations.
Show evidence (1 reference)
PMID:20890271 SUPPORT Human Clinical
"All SDHB-negative GISTs were located in the stomach, had an epithelioid morphology, and had no KIT or PDGFRA mutations."
Pathology study supports gastric location, epithelioid morphology, and KIT/PDGFRA-wildtype status as diagnostic features of SDHB-negative Carney-Stratakis/Carney-triad-associated GIST.
Microplexiform muscularis propria involvement
SDH-deficient gastric GISTs often grow as multiple separate nodules in the muscularis propria, producing a microplexiform or multinodular pattern.
Show evidence (1 reference)
PMID:21997692 SUPPORT Human Clinical
"The tumors commonly involved muscularis propria as multiple apparently separate nodules, creating a "microplexiform" pattern"
Clinicopathologic cohort directly describes the characteristic microplexiform muscularis propria growth pattern.
Epithelioid hypercellular morphology
Epithelioid cytology and epithelioid hypercellular morphology are common microscopic features of SDH-deficient GISTs.
Show evidence (1 reference)
PMID:21997692 SUPPORT Human Clinical
"Epithelioid cytology dominated in 37 cases, 20 tumors had mixed epithelioid and spindle cell, 7 spindle cell, and 1 had extensively pleomorphic cytology."
Cohort histology supports epithelioid cytology as the dominant morphology among SDH-deficient GISTs.
Lymphovascular invasion
Lymphovascular invasion can be common in SDH-deficient gastric GIST, although in the cited cohort it was not independently associated with adverse outcome.
Show evidence (1 reference)
PMID:21997692 SUPPORT Human Clinical
"Lymph node metastases were detected in 5 patients, but lymphovascular invasion was present in >50% of cases studied; these 2 were not related to adverse outcome."
Cohort evidence supports lymphovascular invasion as a frequent histopathologic feature in SDH-deficient GIST.

Pathograph

Use the checkboxes to hide or show graph categories. Hover nodes for evidence and cross-linked metadata.
Pathograph: causal mechanism network for Carney-Stratakis syndrome 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

4
Cardiovascular 1
Hypertension from catecholamine-secreting paraganglioma OCCASIONAL Hypertension (HP:0000822)
Show evidence (1 reference)
PMID:34012423 SUPPORT Human Clinical
"A patient with any type of PGL will present in any of the following contexts: a) because of signs and/or symptoms of excess catecholamine secretion (e.g. hypertension, headache, palpitations, hyperhidrosis, tremor);"
Review supports hypertension as a catecholamine-related manifestation of paraganglioma in the SDH-deficiency spectrum.
Constitutional 1
Abdominal pain or gastrointestinal bleeding OCCASIONAL Abdominal pain (HP:0002027)
Show evidence (1 reference)
PMID:31773431 SUPPORT Human Clinical
"Many patients with GIST are diagnosed after presenting with severe epigastric pain or gastrointestinal bleeding due to ulceration"
Management review supports abdominal pain and bleeding as common presentations for GIST.
Other 2
Paraganglioma or pheochromocytoma VERY_FREQUENT Paraganglioma (HP:0002668)
Show evidence (2 references)
PMID:36387130 SUPPORT Human Clinical
"BACKGROUND: Carney-Stratakis syndrome (CSS) is a rare dyad of paraganglioma (PGL)/pheochromocytoma (PHEO) and gastrointestinal stromal tumor (GIST)."
Case-report review identifies PGL/PHEO as a defining component of the syndrome.
PMID:31174229 SUPPORT Human Clinical
"CSS has autosomal dominant inheritance, incomplete penetrance, and greater relative frequency of PGL over GISTs."
Review supports the high relative frequency of paraganglioma within Carney-Stratakis syndrome.
Gastrointestinal Stromal Tumor VERY_FREQUENT Gastrointestinal stroma tumor (HP:0100723)
Show evidence (2 references)
PMID:17667967 SUPPORT Human Clinical
"In a subset of patients with GISTs, the lesions are associated with paragangliomas; the condition is familial and transmitted as an autosomal-dominant trait."
Landmark series supports GIST plus paraganglioma as a familial tumor dyad.
PMID:21997692 SUPPORT Human Clinical
"SDH-deficient GISTs constitute a small subgroup of gastric GISTs; they usually occur in children and young adults, often have a chronic course similar to that of pediatric and CT GISTs, and have potential association with paraganglioma, necessitating long-term follow-up."
Clinicopathologic cohort supports gastric location, younger age tendency, chronic course, and paraganglioma association of SDH-deficient GIST.
🧬

Genetic Associations

3
SDHB (Germline Loss-of-Function Variants)
Autosomal Dominant
Show evidence (1 reference)
PMID:17667967 SUPPORT Human Clinical
"the GISTs were caused by germline mutations of the genes encoding subunits B, C, or D (the SDHB, SDHC and SDHD genes, respectively)."
Landmark CSS series includes SDHB among causal germline genes.
SDHC (Germline Loss-of-Function Variants)
Autosomal Dominant
Show evidence (1 reference)
PMID:17667967 SUPPORT Human Clinical
"the GISTs were caused by germline mutations of the genes encoding subunits B, C, or D (the SDHB, SDHC and SDHD genes, respectively)."
Landmark CSS series includes SDHC among causal germline genes.
SDHD (Germline Loss-of-Function Variants)
Autosomal Dominant
Show evidence (1 reference)
PMID:17667967 SUPPORT Human Clinical
"the GISTs were caused by germline mutations of the genes encoding subunits B, C, or D (the SDHB, SDHC and SDHD genes, respectively)."
Landmark CSS series includes SDHD among causal germline genes.
💊

Treatments

3
Complete surgical resection
Action: surgical procedure MAXO:0000004
Complete resection is the main treatment for localized SDH-deficient GIST or paraganglioma when feasible, with attention to multifocal, nodal, and recurrent disease.
Show evidence (2 references)
PMID:36387130 SUPPORT Human Clinical
"The unique mechanism of tumorigenesis including hypoxia and hypermethylation caused by SDH deficiency renders target therapy with tyrosine kinase inhibitors ineffective, therefore complete surgical resection is the optimal treatment in the absence of tumor metastases."
Case-report review supports surgery as the preferred local treatment and notes limited TKI effectiveness.
PMID:31773431 SUPPORT Human Clinical
"Thus, surgical resection is the mainstay of treatment for localized disease, but recurrence is common."
Management review supports surgical resection for localized SDH-deficient GIST and cautions that recurrence remains common.
KIT-directed tyrosine kinase inhibitors
Action: targeted therapy Ontology label: Targeted Therapy NCIT:C93352
Standard KIT/PDGFRA-directed therapies such as imatinib are often ineffective in SDH-deficient, KIT/PDGFRA-wildtype GIST. Anti-angiogenic TKIs may have limited activity in selected advanced SDH-deficient GIST cases, but evidence remains incomplete.
Show evidence (1 reference)
PMID:31773431 PARTIAL Human Clinical
"SDH-deficient GISTs are generally resistant to tyrosine-kinase inhibitors, the standard treatment for advanced or metastatic GIST."
Supports avoiding over-reliance on standard GIST TKIs in SDH-deficient disease; marked as partial because some non-imatinib TKIs can have limited activity in selected advanced cases.
Genetic counseling and surveillance
Action: genetic counseling MAXO:0000079
Genetic counseling, cascade testing, and long-term surveillance for paraganglioma, pheochromocytoma, gastric GIST recurrence, and related SDH-deficient tumors are central management components for affected individuals and at-risk relatives.
Show evidence (2 references)
PMID:34012423 SUPPORT Human Clinical
"Patients and family members should be referred for genetic counseling."
Review explicitly recommends genetic counseling for patients and family members in SDH-deficient tumor predisposition contexts.
PMID:31773431 SUPPORT Human Clinical
"For all GIST patients with completely resected disease, follow-up with physical exams and cross sectional imaging (i.e., CT or MRI) of the abdomen/pelvis is recommended every 3-6 months for the first 5 years and then annually."
Management review provides an imaging follow-up framework after resection of GIST, relevant to SDH-deficient GIST surveillance.
🔀

Differential Diagnoses

2

Conditions with similar clinical presentations that must be differentiated from Carney-Stratakis syndrome:

Carney triad
Overlapping Features Carney triad overlaps by including GIST and paraganglioma, but also includes pulmonary chondroma, has a strong female predominance, and is usually linked to SDHC promoter hypermethylation rather than inherited germline SDHB, SDHC, or SDHD variants.
Show evidence (1 reference)
PMID:34012423 SUPPORT Human Clinical
"CT is a very rare disease; PGL, GIST and pulmonary chondromas constitute CT which shows female predilection and may be a mosaic disorder."
Review defines the triad and differentiates it from the inherited dyad.
Sporadic KIT/PDGFRA-mutant gastrointestinal stromal tumor
Overlapping Features Sporadic KIT/PDGFRA-mutant GIST is usually SDHB-positive by immunohistochemistry and lacks the inherited PGL/GIST dyad.
Show evidence (1 reference)
PMID:20890271 SUPPORT Human Clinical
"The five GISTs with a KIT or PDGFRA gene mutation were all immunohistochemically positive for SDHB."
Pathology study supports SDHB staining as a distinction between KIT/PDGFRA-mutant sporadic GIST and SDH-deficient syndromic GIST.
{ }

Source YAML

click to show
name: Carney-Stratakis syndrome
creation_date: "2026-05-11T17:02:12Z"
updated_date: "2026-05-11T17:02:12Z"
category: Genetic
description: >-
  Carney-Stratakis syndrome is a rare hereditary tumor-predisposition syndrome
  defined by the dyad of paraganglioma or pheochromocytoma and
  gastrointestinal stromal tumor. Classic molecularly confirmed disease is
  caused by heterozygous germline loss-of-function variants in succinate
  dehydrogenase complex genes, especially SDHB, SDHC, and SDHD, with incomplete
  penetrance and variable expression. SDH-deficient tumor cells lose
  mitochondrial complex II function, accumulate succinate, activate
  pseudohypoxic transcriptional programs, and develop epigenetic dysregulation
  that supports multifocal gastric GIST and paraganglioma formation.
parents:
- hereditary neoplastic syndrome
- multiple polyglandular tumor
synonyms:
- Carney dyad
- Carney-Stratakis dyad
- GIST-paraganglioma dyad
- hereditary GIST-paraganglioma syndrome
- paraganglioma and gastrointestinal stromal tumor
disease_term:
  preferred_term: Carney-Stratakis syndrome
  term:
    id: MONDO:0011740
    label: Carney-Stratakis syndrome
inheritance:
- name: Autosomal Dominant
  description: >-
    Carney-Stratakis syndrome is inherited in an autosomal dominant manner with
    incomplete penetrance; mutation-positive relatives may be clinically
    unaffected.
  evidence:
  - reference: PMID:31174229
    reference_title: "Paragangliomas in Carney-Stratakis Syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      CSS has autosomal dominant inheritance, incomplete penetrance, and greater
      relative frequency of PGL over GISTs.
    explanation: >-
      Review abstract explicitly states the inheritance pattern and incomplete
      penetrance.
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      CSS is also known as the dyad of GIST and PGL; it affects both genders
      equally and is inherited in an autosomal dominant manner with incomplete
      penetrance.
    explanation: >-
      SDH-deficiency review confirms equal sex involvement and autosomal
      dominant inheritance with incomplete penetrance.
prevalence:
- population: Worldwide reported literature
  percentage: Unknown
  notes: >-
    Population prevalence has not been established. Published evidence consists
    mainly of small family series, case reports, and SDH-deficient GIST/PGL
    reviews.
  evidence:
  - reference: PMID:36387130
    reference_title: "Bladder paraganglioma, gastrointestinal stromal tumor, and SDHB germline mutation in a patient with Carney-Stratakis syndrome: A case report and literature review."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      BACKGROUND: Carney-Stratakis syndrome (CSS) is a rare dyad of
      paraganglioma (PGL)/pheochromocytoma (PHEO) and gastrointestinal stromal
      tumor (GIST).
    explanation: >-
      Case-report review supports rarity and defines the syndrome by its tumor
      dyad.
pathophysiology:
- name: Germline SDH complex loss of function
  description: >-
    Heterozygous germline pathogenic variants in SDHB, SDHC, or SDHD predispose
    to SDH-deficient tumors. Tumor suppressor behavior is supported by loss of
    function of the remaining allele in affected GIST tissue.
  genes:
  - preferred_term: SDHB
    term:
      id: hgnc:10681
      label: SDHB
  - preferred_term: SDHC
    term:
      id: hgnc:10682
      label: SDHC
  - preferred_term: SDHD
    term:
      id: hgnc:10683
      label: SDHD
  biological_processes:
  - preferred_term: mitochondrial electron transport, succinate to ubiquinone
    modifier: DECREASED
    term:
      id: GO:0006121
      label: mitochondrial electron transport, succinate to ubiquinone
  - preferred_term: tricarboxylic acid cycle
    modifier: DECREASED
    term:
      id: GO:0006099
      label: tricarboxylic acid cycle
  evidence:
  - reference: PMID:17667967
    reference_title: "Clinical and molecular genetics of patients with the Carney-Stratakis syndrome and germline mutations of the genes coding for the succinate dehydrogenase subunits SDHB, SDHC, and SDHD."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We investigated 11 patients with the dyad of 'paraganglioma and gastric
      stromal sarcoma'; in eight (from seven unrelated families), the GISTs were
      caused by germline mutations of the genes encoding subunits B, C, or D
      (the SDHB, SDHC and SDHD genes, respectively).
    explanation: >-
      Landmark molecular series identifies germline SDHB, SDHC, and SDHD
      variants as causes of the Carney-Stratakis dyad.
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      CSS is caused by inactivating germline mutations in genes encoding for the
      SDH subunits, while CT is mostly caused by a specific pattern of
      methylation of the SDHC gene and may be due to germline mosaicism of the
      responsible genetic defect.
    explanation: >-
      Review distinguishes germline SDH-subunit inactivation in
      Carney-Stratakis syndrome from Carney triad.
  downstream:
  - target: Succinate accumulation and pseudohypoxia
    description: >-
      SDH dysfunction blocks succinate oxidation and promotes succinate-driven
      inhibition of oxygen-sensing enzymes.
- name: Succinate accumulation and pseudohypoxia
  description: >-
    Loss of SDH activity causes succinate accumulation. Succinate inhibits
    alpha-ketoglutarate-dependent prolyl hydroxylases, stabilizing HIF signaling
    under normoxic conditions and increasing angiogenic, glycolytic, and
    proliferative transcriptional programs.
  biological_processes:
  - preferred_term: cellular response to hypoxia
    modifier: INCREASED
    term:
      id: GO:0071456
      label: cellular response to hypoxia
  - preferred_term: cell population proliferation
    modifier: INCREASED
    term:
      id: GO:0008283
      label: cell population proliferation
  evidence:
  - reference: PMID:31773431
    reference_title: "Current management of succinate dehydrogenase-deficient gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      SDH deficiency leads to accumulation of succinate, an oncometabolite that
      promotes tumorigenesis.
    explanation: >-
      Management review directly links SDH deficiency to succinate accumulation
      and tumorigenesis.
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      This mechanism implies that due to SDH deficiency, succinate is
      accumulated; this inhibits propyl hydroxylases (PHDs) resulting in
      induction of the hypoxic response despite normoxic conditions
      (pseudohypoxia)
    explanation: >-
      Review explains the succinate-to-pseudohypoxia mechanism underlying
      SDH-deficient tumor biology.
  downstream:
  - target: Epigenetic dysregulation
    description: >-
      Succinate also inhibits dioxygenases involved in DNA and histone
      demethylation.
  - target: Multifocal SDH-deficient tumor development
    description: >-
      Pseudohypoxia supports growth and survival of GIST and paraganglioma
      precursor cells.
- name: Epigenetic dysregulation
  description: >-
    Succinate accumulation inhibits alpha-ketoglutarate-dependent dioxygenases,
    including JmjC-domain histone demethylases, producing hypermethylation and
    altered differentiation programs in SDH-deficient tumors.
  biological_processes:
  - preferred_term: chromatin organization
    modifier: DYSREGULATED
    term:
      id: GO:0006325
      label: chromatin organization
  evidence:
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      this acts as an alpha-ketoglutarate competitor, inhibiting
      a-KG-dependent dioxygenases, JIp1, which is involved in sulfur metabolism
      and Jhd1 which belongs to the JmjC-domain-containing histone demethylase
      (JHDM) enzymes.
    explanation: >-
      Review supports the dioxygenase-inhibition branch of SDH-deficient tumor
      pathogenesis.
  downstream:
  - target: Multifocal SDH-deficient tumor development
    description: >-
      Pseudohypoxic and epigenetic programs converge on tumor predisposition.
- name: Multifocal SDH-deficient tumor development
  description: >-
    SDH-deficient tumor biology predisposes to multifocal gastric GIST and
    multicentric paraganglioma or pheochromocytoma. GISTs are usually
    KIT/PDGFRA-wildtype, often gastric, and show loss of SDHB protein by
    immunohistochemistry.
  cell_types:
  - preferred_term: chromaffin cell
    term:
      id: CL:0000166
      label: chromaffin cell
  evidence:
  - reference: PMID:31174229
    reference_title: "Paragangliomas in Carney-Stratakis Syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The PGLs in CSS are multicentric and GISTs are multifocal in all the
      patients, suggesting an inherited susceptibility and associating the two
      manifestations.
    explanation: >-
      Review supports multicentric paraganglioma and multifocal GIST as core
      Carney-Stratakis tumor behavior.
  - reference: PMID:21997692
    reference_title: "Succinate dehydrogenase-deficient GISTs: a clinicopathologic, immunohistochemical, and molecular genetic study of 66 gastric GISTs with predilection to young age."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      SDH-deficient GISTs especially include pediatric GISTs and those
      associated with Carney triad (CT) or Carney-Stratakis syndromes (CSSs);
      the latter 2 also include paraganglioma as a component.
    explanation: >-
      Clinicopathologic series places Carney-Stratakis GISTs in the broader
      SDH-deficient GIST class and notes paraganglioma as the associated tumor
      component.
histopathology:
- name: SDHB-negative gastric epithelioid GIST
  diagnostic: true
  description: >-
    Carney-Stratakis-associated GISTs are SDH-deficient gastric tumors with loss
    of SDHB immunostaining, epithelioid morphology, and absence of KIT or PDGFRA
    driver mutations.
  evidence:
  - reference: PMID:20890271
    reference_title: "SDHB immunohistochemistry: a useful tool in the diagnosis of Carney-Stratakis and Carney triad gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      All SDHB-negative GISTs were located in the stomach, had an epithelioid
      morphology, and had no KIT or PDGFRA mutations.
    explanation: >-
      Pathology study supports gastric location, epithelioid morphology, and
      KIT/PDGFRA-wildtype status as diagnostic features of SDHB-negative
      Carney-Stratakis/Carney-triad-associated GIST.
- name: Microplexiform muscularis propria involvement
  description: >-
    SDH-deficient gastric GISTs often grow as multiple separate nodules in the
    muscularis propria, producing a microplexiform or multinodular pattern.
  evidence:
  - reference: PMID:21997692
    reference_title: "Succinate dehydrogenase-deficient GISTs: a clinicopathologic, immunohistochemical, and molecular genetic study of 66 gastric GISTs with predilection to young age."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The tumors commonly involved muscularis propria as multiple apparently
      separate nodules, creating a "microplexiform" pattern
    explanation: >-
      Clinicopathologic cohort directly describes the characteristic
      microplexiform muscularis propria growth pattern.
- name: Epithelioid hypercellular morphology
  description: >-
    Epithelioid cytology and epithelioid hypercellular morphology are common
    microscopic features of SDH-deficient GISTs.
  evidence:
  - reference: PMID:21997692
    reference_title: "Succinate dehydrogenase-deficient GISTs: a clinicopathologic, immunohistochemical, and molecular genetic study of 66 gastric GISTs with predilection to young age."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Epithelioid cytology dominated in 37 cases, 20 tumors had mixed
      epithelioid and spindle cell, 7 spindle cell, and 1 had extensively
      pleomorphic cytology.
    explanation: >-
      Cohort histology supports epithelioid cytology as the dominant morphology
      among SDH-deficient GISTs.
- name: Lymphovascular invasion
  description: >-
    Lymphovascular invasion can be common in SDH-deficient gastric GIST, although
    in the cited cohort it was not independently associated with adverse
    outcome.
  evidence:
  - reference: PMID:21997692
    reference_title: "Succinate dehydrogenase-deficient GISTs: a clinicopathologic, immunohistochemical, and molecular genetic study of 66 gastric GISTs with predilection to young age."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Lymph node metastases were detected in 5 patients, but lymphovascular
      invasion was present in >50% of cases studied; these 2 were not related to
      adverse outcome.
    explanation: >-
      Cohort evidence supports lymphovascular invasion as a frequent
      histopathologic feature in SDH-deficient GIST.
phenotypes:
- category: Neoplastic
  name: Paraganglioma or pheochromocytoma
  frequency: VERY_FREQUENT
  diagnostic: true
  description: >-
    Paraganglioma, and less often pheochromocytoma, is one of the two defining
    tumor classes in the syndrome. Tumors may be multicentric and can occur in
    head and neck, retroperitoneal, adrenal, pelvic, or other paraganglionic
    sites.
  phenotype_term:
    preferred_term: Paraganglioma
    term:
      id: HP:0002668
      label: Paraganglioma
  evidence:
  - reference: PMID:36387130
    reference_title: "Bladder paraganglioma, gastrointestinal stromal tumor, and SDHB germline mutation in a patient with Carney-Stratakis syndrome: A case report and literature review."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      BACKGROUND: Carney-Stratakis syndrome (CSS) is a rare dyad of
      paraganglioma (PGL)/pheochromocytoma (PHEO) and gastrointestinal stromal
      tumor (GIST).
    explanation: >-
      Case-report review identifies PGL/PHEO as a defining component of the
      syndrome.
  - reference: PMID:31174229
    reference_title: "Paragangliomas in Carney-Stratakis Syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      CSS has autosomal dominant inheritance, incomplete penetrance, and greater
      relative frequency of PGL over GISTs.
    explanation: >-
      Review supports the high relative frequency of paraganglioma within
      Carney-Stratakis syndrome.
- category: Neoplastic
  name: Gastrointestinal Stromal Tumor
  frequency: VERY_FREQUENT
  diagnostic: true
  description: >-
    SDH-deficient GIST is the other defining tumor class. Tumors are generally
    gastric, KIT/PDGFRA-wildtype, may be multifocal, and can recur or metastasize
    after long intervals.
  phenotype_term:
    preferred_term: Gastrointestinal stromal tumor
    term:
      id: HP:0100723
      label: Gastrointestinal stroma tumor
  evidence:
  - reference: PMID:17667967
    reference_title: "Clinical and molecular genetics of patients with the Carney-Stratakis syndrome and germline mutations of the genes coding for the succinate dehydrogenase subunits SDHB, SDHC, and SDHD."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      In a subset of patients with GISTs, the lesions are associated with
      paragangliomas; the condition is familial and transmitted as an
      autosomal-dominant trait.
    explanation: >-
      Landmark series supports GIST plus paraganglioma as a familial tumor dyad.
  - reference: PMID:21997692
    reference_title: "Succinate dehydrogenase-deficient GISTs: a clinicopathologic, immunohistochemical, and molecular genetic study of 66 gastric GISTs with predilection to young age."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      SDH-deficient GISTs constitute a small subgroup of gastric GISTs; they
      usually occur in children and young adults, often have a chronic course
      similar to that of pediatric and CT GISTs, and have potential association
      with paraganglioma, necessitating long-term follow-up.
    explanation: >-
      Clinicopathologic cohort supports gastric location, younger age tendency,
      chronic course, and paraganglioma association of SDH-deficient GIST.
- category: Cardiovascular
  name: Hypertension from catecholamine-secreting paraganglioma
  frequency: OCCASIONAL
  description: >-
    Catecholamine-secreting paragangliomas or pheochromocytomas may cause
    episodic or sustained hypertension, headache, palpitations, and sweating.
  phenotype_term:
    preferred_term: Hypertension
    term:
      id: HP:0000822
      label: Hypertension
  evidence:
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      A patient with any type of PGL will present in any of the following
      contexts: a) because of signs and/or symptoms of excess catecholamine
      secretion (e.g. hypertension, headache, palpitations, hyperhidrosis,
      tremor);
    explanation: >-
      Review supports hypertension as a catecholamine-related manifestation of
      paraganglioma in the SDH-deficiency spectrum.
- category: Gastrointestinal
  name: Abdominal pain or gastrointestinal bleeding
  frequency: OCCASIONAL
  description: >-
    Gastric SDH-deficient GIST may present with abdominal pain, ulcer symptoms,
    or gastrointestinal bleeding, but presentation can be nonspecific.
  phenotype_term:
    preferred_term: Abdominal pain
    term:
      id: HP:0002027
      label: Abdominal pain
  evidence:
  - reference: PMID:31773431
    reference_title: "Current management of succinate dehydrogenase-deficient gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Many patients with GIST are diagnosed after presenting with severe
      epigastric pain or gastrointestinal bleeding due to ulceration
    explanation: >-
      Management review supports abdominal pain and bleeding as common
      presentations for GIST.
diagnosis:
- name: SDHB immunohistochemistry
  description: >-
    Loss of granular SDHB staining in tumor cells, with retained internal
    control staining, is a diagnostic hallmark of SDH-deficient GIST and should
    prompt consideration of Carney-Stratakis syndrome or Carney triad.
  evidence:
  - reference: PMID:20890271
    reference_title: "SDHB immunohistochemistry: a useful tool in the diagnosis of Carney-Stratakis and Carney triad gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We show that Carney-Stratakis syndrome- and Carney-triad-associated GISTs
      are negative by immunohistochemistry for SDHB in contrast to KIT- or
      PDGFRA-mutated GISTs and a majority of sporadic GISTs.
    explanation: >-
      Pathology study establishes SDHB immunohistochemistry as a practical
      discriminator for Carney-Stratakis/Carney-triad-associated GIST.
  - reference: PMID:20890271
    reference_title: "SDHB immunohistochemistry: a useful tool in the diagnosis of Carney-Stratakis and Carney triad gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      In case of negative SDHB staining in GISTs, Carney-Stratakis syndrome or
      Carney triad should be considered and appropriate clinical surveillance
      should be instituted.
    explanation: >-
      Same study provides the diagnostic follow-up implication of negative SDHB
      staining.
- name: Germline SDHx testing
  description: >-
    Germline testing for SDHB, SDHC, and SDHD, with deletion/duplication testing
    when sequencing is negative and clinical suspicion remains high, is used to
    confirm the inherited syndrome and guide family surveillance.
  evidence:
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Genetic testing for SDHx mutations in any of the above patients,
      particularly if there are other family members with any of those tumors
      (do not only include first-degree relatives) should be performed.
    explanation: >-
      SDH-deficiency review recommends SDHx genetic testing in relevant tumor
      contexts and family settings.
genetic:
- name: SDHB
  association: Germline Loss-of-Function Variants
  inheritance:
  - name: Autosomal Dominant
  notes: >-
    SDHB pathogenic variants are an established cause of Carney-Stratakis
    syndrome and are particularly important because SDHB-related paraganglioma
    syndromes have higher metastatic risk in the broader SDHx literature.
  evidence:
  - reference: PMID:17667967
    reference_title: "Clinical and molecular genetics of patients with the Carney-Stratakis syndrome and germline mutations of the genes coding for the succinate dehydrogenase subunits SDHB, SDHC, and SDHD."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      the GISTs were caused by germline mutations of the genes encoding subunits
      B, C, or D (the SDHB, SDHC and SDHD genes, respectively).
    explanation: >-
      Landmark CSS series includes SDHB among causal germline genes.
- name: SDHC
  association: Germline Loss-of-Function Variants
  inheritance:
  - name: Autosomal Dominant
  notes: >-
    SDHC pathogenic variants are an established cause of Carney-Stratakis
    syndrome; this differs from Carney triad, where SDHC promoter methylation is
    more typical.
  evidence:
  - reference: PMID:17667967
    reference_title: "Clinical and molecular genetics of patients with the Carney-Stratakis syndrome and germline mutations of the genes coding for the succinate dehydrogenase subunits SDHB, SDHC, and SDHD."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      the GISTs were caused by germline mutations of the genes encoding subunits
      B, C, or D (the SDHB, SDHC and SDHD genes, respectively).
    explanation: >-
      Landmark CSS series includes SDHC among causal germline genes.
- name: SDHD
  association: Germline Loss-of-Function Variants
  inheritance:
  - name: Autosomal Dominant
  notes: >-
    SDHD pathogenic variants are an established cause of Carney-Stratakis
    syndrome and should be evaluated as part of SDHx testing.
  evidence:
  - reference: PMID:17667967
    reference_title: "Clinical and molecular genetics of patients with the Carney-Stratakis syndrome and germline mutations of the genes coding for the succinate dehydrogenase subunits SDHB, SDHC, and SDHD."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      the GISTs were caused by germline mutations of the genes encoding subunits
      B, C, or D (the SDHB, SDHC and SDHD genes, respectively).
    explanation: >-
      Landmark CSS series includes SDHD among causal germline genes.
treatments:
- name: Complete surgical resection
  description: >-
    Complete resection is the main treatment for localized SDH-deficient GIST or
    paraganglioma when feasible, with attention to multifocal, nodal, and
    recurrent disease.
  treatment_term:
    preferred_term: surgical procedure
    term:
      id: MAXO:0000004
      label: surgical procedure
  evidence:
  - reference: PMID:36387130
    reference_title: "Bladder paraganglioma, gastrointestinal stromal tumor, and SDHB germline mutation in a patient with Carney-Stratakis syndrome: A case report and literature review."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The unique mechanism of tumorigenesis including hypoxia and
      hypermethylation caused by SDH deficiency renders target therapy with
      tyrosine kinase inhibitors ineffective, therefore complete surgical
      resection is the optimal treatment in the absence of tumor metastases.
    explanation: >-
      Case-report review supports surgery as the preferred local treatment and
      notes limited TKI effectiveness.
  - reference: PMID:31773431
    reference_title: "Current management of succinate dehydrogenase-deficient gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Thus, surgical resection is the mainstay of treatment for localized
      disease, but recurrence is common.
    explanation: >-
      Management review supports surgical resection for localized SDH-deficient
      GIST and cautions that recurrence remains common.
- name: KIT-directed tyrosine kinase inhibitors
  description: >-
    Standard KIT/PDGFRA-directed therapies such as imatinib are often ineffective
    in SDH-deficient, KIT/PDGFRA-wildtype GIST. Anti-angiogenic TKIs may have
    limited activity in selected advanced SDH-deficient GIST cases, but evidence
    remains incomplete.
  treatment_term:
    preferred_term: targeted therapy
    term:
      id: NCIT:C93352
      label: Targeted Therapy
  evidence:
  - reference: PMID:31773431
    reference_title: "Current management of succinate dehydrogenase-deficient gastrointestinal stromal tumors."
    supports: PARTIAL
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      SDH-deficient GISTs are generally resistant to tyrosine-kinase inhibitors,
      the standard treatment for advanced or metastatic GIST.
    explanation: >-
      Supports avoiding over-reliance on standard GIST TKIs in SDH-deficient
      disease; marked as partial because some non-imatinib TKIs can have limited
      activity in selected advanced cases.
- name: Genetic counseling and surveillance
  description: >-
    Genetic counseling, cascade testing, and long-term surveillance for
    paraganglioma, pheochromocytoma, gastric GIST recurrence, and related
    SDH-deficient tumors are central management components for affected
    individuals and at-risk relatives.
  treatment_term:
    preferred_term: genetic counseling
    term:
      id: MAXO:0000079
      label: genetic counseling
  evidence:
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Patients and family members should be referred for genetic counseling.
    explanation: >-
      Review explicitly recommends genetic counseling for patients and family
      members in SDH-deficient tumor predisposition contexts.
  - reference: PMID:31773431
    reference_title: "Current management of succinate dehydrogenase-deficient gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      For all GIST patients with completely resected disease, follow-up with
      physical exams and cross sectional imaging (i.e., CT or MRI) of the
      abdomen/pelvis is recommended every 3-6 months for the first 5 years and
      then annually.
    explanation: >-
      Management review provides an imaging follow-up framework after resection
      of GIST, relevant to SDH-deficient GIST surveillance.
differential_diagnoses:
- name: Carney triad
  description: >-
    Carney triad overlaps by including GIST and paraganglioma, but also includes
    pulmonary chondroma, has a strong female predominance, and is usually linked
    to SDHC promoter hypermethylation rather than inherited germline SDHB, SDHC,
    or SDHD variants.
  evidence:
  - reference: PMID:34012423
    reference_title: "Carney Triad, Carney-Stratakis Syndrome, 3PAS and Other Tumors Due to SDH Deficiency."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      CT is a very rare disease; PGL, GIST and pulmonary chondromas constitute
      CT which shows female predilection and may be a mosaic disorder.
    explanation: >-
      Review defines the triad and differentiates it from the inherited dyad.
- name: Sporadic KIT/PDGFRA-mutant gastrointestinal stromal tumor
  description: >-
    Sporadic KIT/PDGFRA-mutant GIST is usually SDHB-positive by
    immunohistochemistry and lacks the inherited PGL/GIST dyad.
  evidence:
  - reference: PMID:20890271
    reference_title: "SDHB immunohistochemistry: a useful tool in the diagnosis of Carney-Stratakis and Carney triad gastrointestinal stromal tumors."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      The five GISTs with a KIT or PDGFRA gene mutation were all
      immunohistochemically positive for SDHB.
    explanation: >-
      Pathology study supports SDHB staining as a distinction between
      KIT/PDGFRA-mutant sporadic GIST and SDH-deficient syndromic GIST.
📚

References & Deep Research

Deep Research

1
Falcon
Carney–Stratakis Syndrome (CSS) — Disease Characteristics Research Report
Edison Scientific Literature 31 citations 2026-05-11T12:52:13.276499

Carney–Stratakis Syndrome (CSS) — Disease Characteristics Research Report

1. Disease information

Overview / definition

Carney–Stratakis syndrome (CSS) is a rare hereditary tumor-predisposition syndrome defined by the dyad of paraganglioma (PGL) and/or pheochromocytoma (PCC) together with gastrointestinal stromal tumor (GIST), typically a KIT/PDGFRA-wildtype, succinate dehydrogenase (SDH)-deficient GIST. (khurana2019paragangliomasincarney–stratakis pages 1-2, pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2)

Synonyms / alternative names include “Carney–Stratakis dyad,” “dyad of paraganglioma and GIST,” and “hereditary GIST–paraganglioma syndrome.” (khurana2019paragangliomasincarney–stratakis pages 1-2, pasini2008clinicalandmolecular pages 1-2)

Evidence type: The syndrome definition and genotype–phenotype associations are derived from aggregated disease-level resources (reviews, guidelines) and from small family series/case reports due to rarity. (pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2)

Key identifiers (requested: OMIM/Orphanet/ICD/MeSH/MONDO)

Using the available tools in this run, I was not able to directly retrieve authoritative database identifiers (OMIM, Orphanet, MeSH, ICD-10/11, MONDO) for CSS; therefore these identifiers are not reported here to avoid uncited or incorrect mapping.

2. Etiology

Primary causes

Genetic (germline) SDH complex loss-of-function is the established cause of classic CSS. Multiple sources describe CSS as autosomal dominant with incomplete penetrance and as being caused by germline heterozygous loss-of-function pathogenic variants in SDH subunit genes, especially SDHB, SDHC, SDHD. (pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2, pasini2008clinicalandmolecular pages 4-6)

Abstract-supported definition (example quote): Lobato et al. state, “Carney-Stratakis syndrome (CSS) is an autosomal dominant rare syndrome, with incomplete penetrance, characterized by the association of paragangliomas and/or pheochromocytomas and gastrointestinal stromal tumors (GISTs).” (lobato2023threecasesof pages 1-2)

Risk factors

  • Family history / inherited SDHx pathogenic variants are the main risk factors; CSS cases can still occur with limited family history due to incomplete penetrance and variable expressivity. (khurana2019paragangliomasincarney–stratakis pages 1-2, pasini2008clinicalandmolecular pages 4-6)
  • Parent-of-origin effects are noted in SDH-related paraganglioma syndromes (especially SDHD) and can obscure family history patterns (more prominent in the broader SDH-PGL literature than in CSS-specific cohorts). (pitsava2021carneytriadcarneystratakis pages 3-4)

Protective factors / gene–environment interactions

No protective factors or gene–environment interactions specific to CSS were identified in the retrieved sources.

3. Phenotypes (clinical spectrum)

Core phenotypes

CSS manifests as combinations of: 1) Paragangliomas (PGLs) and/or pheochromocytomas (PCCs), often multicentric/multifocal. (khurana2019paragangliomasincarney–stratakis pages 1-2, pasini2008clinicalandmolecular pages 1-2) 2) Gastrointestinal stromal tumors (GISTs) that are SDH-deficient and usually KIT/PDGFRA-wildtype; in CSS, GISTs are frequently multifocal and preferentially gastric. (khurana2019paragangliomasincarney–stratakis pages 3-4, pasini2008clinicalandmolecular pages 1-2, khurana2019paragangliomasincarney–stratakis pages 2-3)

Khurana et al. emphasize that CSS has “greater relative frequency of PGL over GISTs,” and that “PGLs in CSS are multicentric and GISTs are multifocal.” (khurana2019paragangliomasincarney–stratakis pages 1-2)

Phenotype characteristics

  • Age of onset: CSS and SDH-deficient GISTs are enriched in younger patients; in the landmark CSS genetic series, affected individuals were young (e.g., earlier series average age reported as ~23 years). (pasini2008clinicalandmolecular pages 1-2)
  • GIST anatomy and pathology: SDH-deficient GISTs are described as predominantly gastric, often epithelioid or mixed morphology, multinodular/plexiform growth, multiple tumors, lymphovascular invasion, and occasional lymph node metastasis. (khurana2019paragangliomasincarney–stratakis pages 3-4, kim2024pathologicdiagnosisand pages 3-4, kim2024pathologicdiagnosisand pages 1-3)
  • PGL/PCC: PGLs are neuroendocrine tumors of neural crest origin and are commonly in head/neck or retroperitoneal regions; CSS can present with unusual locations (e.g., bladder PGL described in a CSS case report). (shi2022bladderparagangliomagastrointestinal pages 1-2)

Suggested HPO terms (non-exhaustive)

  • Paraganglioma: HP:0002666
  • Pheochromocytoma: HP:0002667
  • Gastrointestinal stromal tumor: HP:0031275 (term name varies by HPO version; use nearest GIST term)
  • Gastrointestinal hemorrhage (if present): HP:0002239
  • Abdominal pain: HP:0002027
  • Gastrointestinal neoplasm (broad): HP:0007378

Note: Exact HPO IDs for “GIST” should be verified against the current HPO release when implementing.

4. Genetic / molecular information

Causal genes (CSS)

Classic CSS is most consistently linked to germline loss-of-function variants in: - SDHB (HGNC:10681) - SDHC (HGNC:10682) - SDHD (HGNC:10683)

These genes encode subunits of mitochondrial complex II (SDH), and germline disruption predisposes to the CSS dyad. (pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2, pasini2008clinicalandmolecular pages 4-6)

SDHA is frequently mutated in SDH-deficient GIST overall, but recent review synthesis indicates SDHA germline cases more often present as isolated SDH-deficient GIST rather than classic CSS; co-occurrence with PGL is described as rare. (schipani2023sdhagermlinemutations pages 8-9)

Pathogenic variants (representative examples)

In the landmark CSS series, Pasini et al. studied 11 patients and reported that in eight (from seven unrelated families) GISTs were caused by germline mutations in SDHB, SDHC, or SDHD, with autosomal-dominant inheritance and incomplete penetrance. (pasini2008clinicalandmolecular pages 1-2)

Reported variants from the Pasini cohort include (examples; not exhaustive): - SDHB: c.72+1G>T, c.423+1G>C, c.45_46insCC, large deletions. (pasini2008clinicalandmolecular pages 4-6, pasini2008clinicalandmolecular pages 1-2) - SDHC: c.43C>T (p.Arg15X), c.405+1G>A (splice), and later a germline SDHC exon 3 deletion reported in a 2023 case series. (pasini2008clinicalandmolecular pages 4-6, lobato2023threecasesof pages 1-2) - SDHD: c.57delG. (pasini2008clinicalandmolecular pages 1-2)

Inheritance pattern and penetrance

CSS is described as autosomal dominant with incomplete penetrance, supported by unaffected mutation carriers in pedigrees (e.g., SDHB/SDHC splice variants inherited from clinically unaffected mothers). (pasini2008clinicalandmolecular pages 4-6, pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2)

Quantitative penetrance estimates are more available for SDHx carrier cohorts broadly (PPGL predisposition) than for CSS specifically. For example, SDH-related syndromes have subunit-specific penetrance features; one synthesis notes SDHB has lower penetrance but higher metastatic risk, while SDHD often has higher penetrance and head/neck predominance. (pitsava2021carneytriadcarneystratakis pages 3-4)

Variant type and mechanism

Most CSS variants are consistent with loss of function (splice-site, nonsense, frameshift, or large deletion), consistent with tumor-suppressor biology and frequent “second-hit” loss of the wild-type allele (LOH) in tumors. (pasini2008clinicalandmolecular pages 4-6)

5. Environmental information

No consistent non-genetic environmental triggers, lifestyle determinants, or infectious agents specific to CSS were identified in the retrieved literature. CSS is primarily genetic. (pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2)

6. Mechanism / pathophysiology

Core causal chain (from germline SDHx loss to tumors)

1) Germline SDHx loss-of-function → reduced SDH (mitochondrial complex II) activity in susceptible tissues. (pasini2008clinicalandmolecular pages 1-2, khurana2019paragangliomasincarney–stratakis pages 2-3) 2) Succinate accumulation (oncometabolite) due to impaired conversion of succinate to fumarate. (pitsava2021carneytriadcarneystratakis pages 3-4, khurana2019paragangliomasincarney–stratakis pages 2-3) 3) Pseudohypoxia: succinate inhibits prolyl hydroxylases, stabilizing HIF-1α, driving hypoxia-like transcriptional programs. (khurana2019paragangliomasincarney–stratakis pages 2-3) 4) Epigenetic reprogramming: succinate inhibits TET/JmjC demethylases, promoting DNA/histone hypermethylation and altered differentiation programs. (pitsava2021carneytriadcarneystratakis pages 3-4, khurana2019paragangliomasincarney–stratakis pages 2-3) 5) Downstream signaling changes in SDH-deficient GIST can include VEGF/IGF2 upregulation and activation of PI3K/AKT and MAPK signaling as summarized in a 2024 mini-review. (kim2024pathologicdiagnosisand pages 3-4)

GO and CL term suggestions (mechanism anchoring)

  • GO:0006121 mitochondrial electron transport, succinate to ubiquinone
  • GO:0006099 tricarboxylic acid cycle
  • GO:0001666 response to hypoxia
  • GO:0071559 response to hypoxia-inducible factor (or related HIF terms depending on GO version)
  • GO:0006325 chromatin organization; GO:0043044 ATP-dependent chromatin remodeling (as downstream)
  • CL (cell types relevant to lesions):
  • Chromaffin cell (adrenal medulla) / paraganglionic cells (CL term mapping should be validated)
  • Interstitial cells of Cajal (cell-of-origin for GIST; CL mapping requires validation)

7. Anatomical structures affected

Primary organs / structures

  • Stomach (predominant site for SDH-deficient GIST). (khurana2019paragangliomasincarney–stratakis pages 3-4, kim2024pathologicdiagnosisand pages 1-3)
  • Paraganglia along the paravertebral axis; adrenal medulla for PCC. (khurana2019paragangliomasincarney–stratakis pages 1-2, khurana2019paragangliomasincarney–stratakis pages 2-3)

UBERON term suggestions

  • Stomach: UBERON:0000945
  • Adrenal gland: UBERON:0002369 (adrenal medulla is a substructure)
  • Paraganglion: UBERON mapping should be validated for “paraganglion” specific class

Subcellular localization

SDH is localized to the mitochondrial inner membrane (complex II); dysfunction is therefore a mitochondrial metabolic defect. (khurana2019paragangliomasincarney–stratakis pages 2-3)

8. Temporal development

Onset and course

CSS often presents in childhood/adolescence/young adulthood, particularly for SDH-deficient GIST, and can show multifocal tumors and metastatic potential but with variable/indolent clinical courses in some cases. (khurana2019paragangliomasincarney–stratakis pages 3-4, pasini2008clinicalandmolecular pages 1-2)

9. Inheritance and population

Epidemiology

CSS is rare; no robust prevalence/incidence estimates were retrieved in the available texts for this run.

Sex ratio

Reviews describe CSS as affecting both genders (in contrast to Carney triad, which has female predilection). (pitsava2021carneytriadcarneystratakis pages 3-4)

Tumor risk statistics (from SDHB carrier surveillance cohorts; not CSS-specific)

A surveillance series summarized in a 2019 SDH-deficient GIST management review reported that among 65 asymptomatic SDHB mutation carriers undergoing annual abdominal MRI-based surveillance, 25% developed SDHB-related cancers within 6 years, and 16.6% had an asymptomatic tumor detected on the first surveillance scan. (neppala2019currentmanagementof pages 6-7)

10. Diagnostics

Pathology and immunohistochemistry

Loss of SDHB immunohistochemical staining is a validated surrogate marker of SDH deficiency and helps distinguish SDH-deficient GIST (including CSS-associated tumors) from KIT/PDGFRA-mutant GIST. (gaal2011sdhbimmunohistochemistrya pages 6-8)

A representative example of this real-world diagnostic pattern is shown in Gaal et al. Figure 1 panel (a): a CSS-associated GIST demonstrates negative SDHB staining in tumor cells, with endothelial cells serving as internal positive control. (gaal2011sdhbimmunohistochemistrya media 9958076a)

Molecular testing

  • CSS workup commonly includes tumor and germline testing of SDHx genes by NGS, with copy-number analysis (e.g., MLPA) when sequencing is negative but suspicion remains. A 2023 case series illustrates that NGS/MLPA may be negative in clinically consistent CSS, highlighting genetic heterogeneity and potential underdiagnosis; they also report an SDHC exon 3 deletion not previously reported. (lobato2023threecasesof pages 1-2)
  • In CSS-associated tumors, GISTs typically lack common KIT/PDGFRA driver mutations. (pasini2008clinicalandmolecular pages 1-2)

Biochemical testing (PPGL)

Biochemical evaluation for catecholamine excess (e.g., plasma metanephrines/normetanephrines) is used in real-world CSS/PCC evaluation and perioperative planning (α-blockade). (lobato2023threecasesof pages 1-2)

Imaging

Cross-sectional imaging (CT/MRI) and functional imaging (e.g., PET/CT) are used for tumor localization and staging in CSS cases and broader SDHx syndromes. (lobato2023threecasesof pages 1-2, khurana2019paragangliomasincarney–stratakis pages 2-3)

Differential diagnosis

Key distinctions include: - Carney triad (PGL + GIST + pulmonary chondroma), often associated with SDHC promoter hypermethylation and female predominance, and frequently non-hereditary/mosaic rather than classic autosomal dominant inheritance. (pitsava2021carneytriadcarneystratakis pages 3-4) - Sporadic KIT/PDGFRA-mutant GIST (typically SDHB-positive by IHC). (gaal2011sdhbimmunohistochemistrya pages 6-8)

11. Outcome / prognosis

No CSS-specific survival rates were identified in retrieved sources. SDH-deficient GIST can metastasize (including nodal metastasis) yet may have relatively indolent behavior compared with other GIST subsets, with clinical course varying substantially. (khurana2019paragangliomasincarney–stratakis pages 3-4, kim2024pathologicdiagnosisand pages 3-4)

12. Treatment

Surgical management (current standard)

For localized CSS-associated tumors, complete surgical resection is a primary approach, particularly because SDH-deficient GIST is often not responsive to standard KIT-directed tyrosine kinase inhibitors. (shi2022bladderparagangliomagastrointestinal pages 1-2, neppala2019currentmanagementof pages 1-2)

Systemic therapy considerations

  • Imatinib: SDH-deficient GISTs are generally described as poorly responsive, which is clinically important in CSS because these tumors are frequently KIT/PDGFRA-wildtype. (khurana2019paragangliomasincarney–stratakis pages 4-4, neppala2019currentmanagementof pages 1-2)
  • Anti-angiogenic TKIs (e.g., sunitinib, regorafenib, pazopanib) and other systemic options are discussed in reviews for SDH-deficient tumors, but evidence remains limited and often extrapolated from broader SDH-deficient GIST/PPGL experiences. (khurana2019paragangliomasincarney–stratakis pages 3-4, schipani2023sdhagermlinemutations pages 8-9)

Surveillance / follow-up (real-world implementation)

For completely resected SDH-deficient GIST, a commonly cited follow-up framework includes physical exams and cross-sectional abdominal/pelvic imaging every 3–6 months for 5 years, then annually, as summarized in a management review discussing guideline-consistent practices. (neppala2019currentmanagementof pages 6-7)

Relevant clinical trials

  • Guadecitabine (SGI-110) DNMT inhibitor for SDH-deficient tumors: Phase II trial NCT03165721 (ClinicalTrials.gov; first posted 2017; start date 2017-08-16; primary completion 2020-02-24) evaluated guadecitabine in wt/SDH-deficient GIST and SDH-mutant PPGL strata; the study was terminated due to low accrual. URL: https://clinicaltrials.gov/study/NCT03165721 (NCT03165721 chunk 1, NCT03165721 chunk 2)
  • Natural history / biospecimen study: NCT03739827 (recruiting; sponsor NCI; primary completion 2028-05-31) includes “SDH deficient GIST” and “Paraganglioma,” enrolling germline variant carriers and relatives to collect biospecimens, imaging, and longitudinal clinical data. URL: https://clinicaltrials.gov/study/NCT03739827 (NCT03739827 chunk 1)

Suggested MAXO terms

  • Surgical resection: MAXO:0000011 (surgery; verify exact child term)
  • Genetic counseling: MAXO:0000075 (verify)
  • Tumor surveillance / screening: MAXO:0000127 (verify)
  • α-adrenergic blockade for PCC: MAXO mapping should be validated

13. Prevention

Primary prevention is not established for CSS because it is an inherited tumor predisposition syndrome. Secondary/tertiary prevention relies on genetic counseling, cascade testing, and surveillance imaging/biochemical monitoring for early tumor detection and management in SDHx variant carriers. (neppala2019currentmanagementof pages 6-7, lobato2023threecasesof pages 1-2)

14. Other species / natural disease

No naturally occurring CSS analog in non-human species was identified in retrieved sources.

15. Model organisms

The retrieved sources for this run did not provide explicit descriptions of CSS-specific model organisms (e.g., SDHx mouse models reproducing the dyad phenotype). Mechanistic descriptions strongly implicate mitochondrial metabolism and epigenetic dysregulation in SDH-deficient tumors, but dedicated model-system evidence should be curated from additional experimental literature beyond the documents retrieved here. (pitsava2021carneytriadcarneystratakis pages 3-4, khurana2019paragangliomasincarney–stratakis pages 2-3)


High-level synthesis (2023–2024 emphasis)

Recent case-based and pathology-focused literature reinforces that CSS should be considered when encountering SDH-deficient, KIT/PDGFRA-wildtype gastric GIST and/or PGL/PCC, and that SDHx testing should include deletion/duplication analysis when sequencing is negative. (lobato2023threecasesof pages 1-2, kim2024pathologicdiagnosisand pages 3-4)

A 2024 mini-review summarizes modern diagnostic practice for molecularly diverse GIST, emphasizing that ancillary testing (IHC, NGS) is essential because some epithelioid/mixed tumors may lose canonical KIT/DOG1 signals, and that SDH-deficient GIST (including CSS-associated) behaves as a distinct subgroup with TKI resistance. (kim2024pathologicdiagnosisand pages 3-4)


Summary table

Domain Core fact Recent source(s) with DOI/URL and publication date Key evidence source (author-year)
Definition / synonyms Carney–Stratakis syndrome (CSS) is a rare hereditary tumor-predisposition syndrome defined by the dyad of paraganglioma/pheochromocytoma and gastrointestinal stromal tumor (GIST); synonyms include Carney–Stratakis dyad, dyad of paraganglioma and GIST, and hereditary GIST-paraganglioma syndrome. It is distinct from Carney triad. (khurana2019paragangliomasincarney–stratakis pages 1-2, pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2) Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139; Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467 Pasini-2008; Lobato-2023
Causal genes Canonical causal genes are germline loss-of-function variants in SDHB, SDHC, and SDHD; these explain most molecularly confirmed CSS families. SDHA is part of the SDH-deficient GIST spectrum, but recent reviews emphasize SDHA more often causes isolated SDH-deficient GIST rather than classic CSS. (pasini2008clinicalandmolecular pages 1-2, schipani2023sdhagermlinemutations pages 8-9, lobato2023threecasesof pages 1-2, pasini2008clinicalandmolecular pages 4-6) Schipani et al., Genes (Mar 2023), DOI: 10.3390/genes14030646, https://doi.org/10.3390/genes14030646; Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139 Pasini-2008; Schipani-2023
Representative reported variants Reported CSS-associated variants include SDHB c.72+1G>T, c.423+1G>C, c.45_46insCC, large deletions; SDHC c.43C>T, c.405+1G>A, exon 3 deletion; SDHD c.57delG. Variable family expression and unaffected carriers have been documented. (pasini2008clinicalandmolecular pages 4-6, pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2) Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139 Pasini-2008; Lobato-2023
Inheritance / penetrance CSS is generally described as autosomal dominant with incomplete penetrance and variable expressivity. Family studies show mutation-positive but clinically unaffected relatives, supporting reduced penetrance. (khurana2019paragangliomasincarney–stratakis pages 1-2, pasini2008clinicalandmolecular pages 1-2, lobato2023threecasesof pages 1-2) Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139 Pasini-2008; Khurana-2019; Lobato-2023
Key tumor types Hallmark tumors are paragangliomas/pheochromocytomas (often multicentric/multifocal) and SDH-deficient wild-type GISTs (often multifocal, usually gastric). PGL may be more frequent than GIST in CSS cohorts/reviews. (shi2022bladderparagangliomagastrointestinal pages 1-2, khurana2019paragangliomasincarney–stratakis pages 1-2, khurana2019paragangliomasincarney–stratakis pages 3-4, lobato2023threecasesof pages 1-2, schipani2023sdhagermlinemutations pages 1-2) Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467; Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139 Khurana-2019; Shi-2022; Kim-2024
Typical clinicopathologic pattern CSS-associated GISTs are usually KIT/PDGFRA-wildtype, gastric, often epithelioid or mixed, multinodular/plexiform, with lymphovascular invasion and occasional nodal/liver metastases; despite metastatic potential, some cases behave relatively indolently. (khurana2019paragangliomasincarney–stratakis pages 4-4, khurana2019paragangliomasincarney–stratakis pages 3-4, kim2024pathologicdiagnosisand pages 3-4, schipani2023sdhagermlinemutations pages 1-2, kim2024pathologicdiagnosisand pages 1-3) Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467; Schipani et al., Genes (Mar 2023), DOI: 10.3390/genes14030646, https://doi.org/10.3390/genes14030646 Khurana-2019; Kim-2024; Schipani-2023
Diagnostic hallmarks Key hallmarks are loss of SDHB expression by immunohistochemistry (marker of SDH deficiency) and absence of KIT/PDGFRA driver mutations. SDHA IHC loss can point to SDHA-mutant GIST, while retained SDHB is typical of KIT/PDGFRA-mutant GIST. (khurana2019paragangliomasincarney–stratakis pages 2-3, gaal2011sdhbimmunohistochemistrya pages 6-8, kim2024pathologicdiagnosisand pages 3-4, schipani2023sdhagermlinemutations pages 1-2, gaal2011sdhbimmunohistochemistrya media 9958076a) Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467; Schipani et al., Genes (Mar 2023), DOI: 10.3390/genes14030646, https://doi.org/10.3390/genes14030646 Gaal-2011; Kim-2024; Schipani-2023
Mechanistic concepts SDH loss causes succinate accumulation, which inhibits prolyl hydroxylases and stabilizes HIF-1α (pseudohypoxia), and inhibits TET/JmjC demethylases, promoting global DNA/histone hypermethylation. These mechanisms help explain CSS tumorigenesis and reduced sensitivity of SDH-deficient GIST to standard KIT-directed therapy. (shi2022bladderparagangliomagastrointestinal pages 1-2, pitsava2021carneytriadcarneystratakis pages 3-4, khurana2019paragangliomasincarney–stratakis pages 2-3, kim2024pathologicdiagnosisand pages 3-4) Schipani et al., Genes (Mar 2023), DOI: 10.3390/genes14030646, https://doi.org/10.3390/genes14030646; Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467 Pitsava-2021; Khurana-2019; Kim-2024
Molecular testing / workup Current practice-oriented reviews and guidelines support SDHB IHC in wild-type GIST, followed by germline SDHx testing and consideration of copy-number analysis (e.g., MLPA) when NGS is negative but clinical suspicion remains high. Ancillary tests may include CT/MRI, PET/CT, catecholamine/metanephrine testing, and pathology review. (neppala2019currentmanagementof pages 6-7, florou2025areviewof pages 4-4, lobato2023threecasesof pages 1-2) Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139; Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467 Lobato-2023; Kim-2024
Recent clinical relevance (2023–2024) 2023–2024 literature reinforces that CSS belongs within the SDH-deficient GIST / PPGL spectrum, that imatinib is generally ineffective in SDH-deficient GIST, and that genetic counseling/surveillance are important because syndromic disease may be missed if only tumor sequencing is performed. (schipani2023sdhagermlinemutations pages 8-9, kim2024pathologicdiagnosisand pages 3-4, neppala2019currentmanagementof pages 6-7, lobato2023threecasesof pages 1-2) Schipani et al., Genes (Mar 2023), DOI: 10.3390/genes14030646, https://doi.org/10.3390/genes14030646; Lobato et al., JCEM Case Reports (Nov 2023), DOI: 10.1210/jcemcr/luad139, https://doi.org/10.1210/jcemcr/luad139; Kim & Lee, Front Oncol (Nov 2024), DOI: 10.3389/fonc.2024.1487467, https://doi.org/10.3389/fonc.2024.1487467 Schipani-2023; Lobato-2023; Kim-2024

Table: This table condenses the key definitional, genetic, mechanistic, and diagnostic facts about Carney–Stratakis syndrome for rapid knowledge-base entry. It highlights the SDHx basis of the syndrome, classic tumor dyad, hallmark pathology, and the most relevant 2023–2024 sources.


Key visual evidence

  • SDHB-negative immunohistochemistry pattern in CSS-associated GIST (diagnostic hallmark): (gaal2011sdhbimmunohistochemistrya media 9958076a)

References

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  3. (lobato2023threecasesof pages 1-2): Eduardo C Lobato, Felipe F Castro, Lucas S Santana, Ibere C Soares, Gustavo F C Fagundes, and Madson Q Almeida. Three cases of carney-stratakis syndrome: a genetically heterogeneous disease. JCEM Case Reports, Nov 2023. URL: https://doi.org/10.1210/jcemcr/luad139, doi:10.1210/jcemcr/luad139. This article has 2 citations.

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  8. (kim2024pathologicdiagnosisand pages 3-4): Younghoon Kim and Sung Hak Lee. Pathologic diagnosis and molecular features of gastrointestinal stromal tumors: a mini-review. Frontiers in Oncology, Nov 2024. URL: https://doi.org/10.3389/fonc.2024.1487467, doi:10.3389/fonc.2024.1487467. This article has 10 citations.

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  10. (shi2022bladderparagangliomagastrointestinal pages 1-2): Yihang Shi, Li Ding, Chengqiang Mo, Yanji Luo, Shaoqing Huang, Shirong Cai, Yanzhe Xia, and Xinhua Zhang. Bladder paraganglioma, gastrointestinal stromal tumor, and sdhb germline mutation in a patient with carney-stratakis syndrome: a case report and literature review. Frontiers in Oncology, Oct 2022. URL: https://doi.org/10.3389/fonc.2022.1030092, doi:10.3389/fonc.2022.1030092. This article has 6 citations.

  11. (schipani2023sdhagermlinemutations pages 8-9): Angela Schipani, Margherita Nannini, Annalisa Astolfi, and Maria A. Pantaleo. Sdha germline mutations in sdh-deficient gists: a current update. Genes, 14:646, Mar 2023. URL: https://doi.org/10.3390/genes14030646, doi:10.3390/genes14030646. This article has 24 citations.

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  13. (gaal2011sdhbimmunohistochemistrya pages 6-8): José Gaal, Constantine A Stratakis, J Aidan Carney, Evan R Ball, Esther Korpershoek, Maya B Lodish, Isaac Levy, Paraskevi Xekouki, Francien H van Nederveen, Michael A den Bakker, Maureen O'Sullivan, Winand NM Dinjens, and Ronald R de Krijger. Sdhb immunohistochemistry: a useful tool in the diagnosis of carney–stratakis and carney triad gastrointestinal stromal tumors. Modern Pathology, 24:147-151, Jan 2011. URL: https://doi.org/10.1038/modpathol.2010.185, doi:10.1038/modpathol.2010.185. This article has 252 citations and is from a domain leading peer-reviewed journal.

  14. (gaal2011sdhbimmunohistochemistrya media 9958076a): José Gaal, Constantine A Stratakis, J Aidan Carney, Evan R Ball, Esther Korpershoek, Maya B Lodish, Isaac Levy, Paraskevi Xekouki, Francien H van Nederveen, Michael A den Bakker, Maureen O'Sullivan, Winand NM Dinjens, and Ronald R de Krijger. Sdhb immunohistochemistry: a useful tool in the diagnosis of carney–stratakis and carney triad gastrointestinal stromal tumors. Modern Pathology, 24:147-151, Jan 2011. URL: https://doi.org/10.1038/modpathol.2010.185, doi:10.1038/modpathol.2010.185. This article has 252 citations and is from a domain leading peer-reviewed journal.

  15. (neppala2019currentmanagementof pages 1-2): Pushpa Neppala, Sudeep Banerjee, Paul T. Fanta, Mayra Yerba, Kevin A. Porras, Adam M. Burgoyne, and Jason K. Sicklick. Current management of succinate dehydrogenase–deficient gastrointestinal stromal tumors. Cancer and Metastasis Reviews, 38:525-535, Sep 2019. URL: https://doi.org/10.1007/s10555-019-09818-0, doi:10.1007/s10555-019-09818-0. This article has 62 citations and is from a peer-reviewed journal.

  16. (khurana2019paragangliomasincarney–stratakis pages 4-4): Arushi Khurana, Lin Mei, Anthony C. Faber, Steven C. Smith, and Sosipatros A. Boikos. Paragangliomas in carney–stratakis syndrome. Hormone and Metabolic Research, 51:437-442, Jun 2019. URL: https://doi.org/10.1055/a-0918-8340, doi:10.1055/a-0918-8340. This article has 6 citations and is from a peer-reviewed journal.

  17. (NCT03165721 chunk 1): John Glod. A Phase II Trial of the DNA Methyl Transferase Inhibitor, Guadecitabine (SGI-110), in Children and Adults With Wild Type GIST,Pheochromocytoma and Paraganglioma Associated With Succinate Dehydrogenase Deficiency and HLRCC-associated Kidney Cancer. National Cancer Institute (NCI). 2017. ClinicalTrials.gov Identifier: NCT03165721

  18. (NCT03165721 chunk 2): John Glod. A Phase II Trial of the DNA Methyl Transferase Inhibitor, Guadecitabine (SGI-110), in Children and Adults With Wild Type GIST,Pheochromocytoma and Paraganglioma Associated With Succinate Dehydrogenase Deficiency and HLRCC-associated Kidney Cancer. National Cancer Institute (NCI). 2017. ClinicalTrials.gov Identifier: NCT03165721

  19. (NCT03739827 chunk 1): Natural History and Biospecimen Acquisition for Children and Adults With Rare Solid Tumors. National Cancer Institute (NCI). 2019. ClinicalTrials.gov Identifier: NCT03739827

  20. (schipani2023sdhagermlinemutations pages 1-2): Angela Schipani, Margherita Nannini, Annalisa Astolfi, and Maria A. Pantaleo. Sdha germline mutations in sdh-deficient gists: a current update. Genes, 14:646, Mar 2023. URL: https://doi.org/10.3390/genes14030646, doi:10.3390/genes14030646. This article has 24 citations.

  21. (florou2025areviewof pages 4-4): Vaia Florou, Michelle F. Jacobs, Ruth Casey, Denisse Evans, Becky Owens, Margarita Raygada, Sara Rothschild, and Samantha E. Greenberg. A review of genomic testing and sdh‐ deficiency in gastrointestinal stromal tumors: getting to the gist. Cancer Medicine, Feb 2025. URL: https://doi.org/10.1002/cam4.70669, doi:10.1002/cam4.70669. This article has 8 citations and is from a peer-reviewed journal.