Zlotogora-Ogur Syndrome

Mendelian MONDO:0009151 Pathograph 17 Show in embeddings browser Ectodermal dysplasia Orofacial cleft Autosomal recessive disease

Zlotogora-Ogur syndrome (CLPED1) is a rare autosomal recessive disorder caused by biallelic loss-of-function variants in the PVRL1 (NECTIN1) gene encoding nectin-1, an immunoglobulin-related transmembrane cell-cell adhesion molecule that is part of the NAP cell adhesion system. The syndrome is characterized by cleft lip and/or palate, ectodermal dysplasia (sparse hair with pili torti, hypodontia, nail dystrophy, and hypohidrosis), cutaneous syndactyly of fingers and/or toes, and in some cases intellectual disability. Nectin-1 is expressed in keratinocytes, neurons, and the developing face and palate, and is critical for the initial step in adherens junction and tight junction formation. The disorder was first described in families from Israel and Brazil and was later reported at high frequency on Margarita Island in Venezuela, where homozygous W185X causes CLPED1. A proposed heterozygote advantage against alpha-herpesvirus infection remains a population-genetic hypothesis rather than an established disease mechanism.

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1
Inheritance
3
Pathophys.
13
Phenotypes
2
Gaps
17
Pathograph
2
Genes
4
Variants
4
Medical Actions
1
Deep Research
👪

Inheritance

1
Autosomal recessive inheritance HP:0000007
CLPED1 is inherited in an autosomal recessive manner and is caused by biallelic pathogenic NECTIN1 variants.
Autosomal recessive inheritance
Show evidence (1 reference)
PMID:10932188 SUPPORT Human Clinical
"we describe positional cloning of the gene responsible for an autosomal recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously ED4; ref. 2), which we identify as PVRL1"
The molecular discovery study explicitly identifies CLPED1 as an autosomal recessive PVRL1-associated syndrome.
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Discussions and Knowledge Gaps

2
Does the dominant-interfering effect of NECTIN1 W185X in mouse palatal epithelium explain human CLPED1, which is inherited as a recessive disorder?
HUMAN MODEL MISMATCH OPEN clped1_w185x_mouse_human_allele_mechanism
W185X expression produces cleft palate with greater penetrance than Nectin1 loss in mice, suggesting dominant interference, whereas human syndromic disease requires biallelic pathogenic variants. The mouse result supports a role for the nectin-afadin axis but does not establish the allelic mechanism in human palate or ectodermal appendages.
Show evidence (1 reference)
PMID:32554531 SUPPORT Model Organism
"expression of the human disease mutant NECTIN1W185X causes CP with greater penetrance than Nectin1 loss, suggesting this alteration may drive CP via a dominant interfering mechanism"
The mouse study explicitly identifies the allele-mechanism mismatch that remains unresolved in the recessively inherited human syndrome.
What are the syndrome-specific phenotype frequencies, natural history, and outcomes of cleft, limb, dental, dermatologic, and developmental management?
KNOWLEDGE GAP OPEN clped1_natural_history_and_management_evidence
Published CLPED1 evidence is dominated by small pedigrees and case reports. The entry therefore avoids unsupported frequency labels and does not infer treatment efficacy from citations that only establish the corresponding phenotype. Cached exact-text sources directly support hypodontia and dry hair, but not separate dry-skin, sparse-eyebrow, nail-dysplasia, palmoplantar-keratoderma, or broader dental-morphology assertions, nor a congenital-to-progressive natural-history sequence. Mixed ectodermal-dysplasia cohorts provide only indirect cleft-management evidence.

Pathophysiology

3
Loss of Nectin-1 Cell Adhesion
PVRL1 (NECTIN1) encodes nectin-1, an immunoglobulin-related transmembrane cell-cell adhesion molecule that is part of the NAP cell adhesion system. Nectin-1 is important for the initial step in adherens-junction and tight-junction formation. The four PVRL1 variants reported through 2015 produced truncated proteins lacking the transmembrane and intracellular domains required to initiate nectin-1-mediated adhesion. In the related PVRL4-associated ectodermal dysplasia-syndactyly syndrome, mutant nectin-4 loses its ability to bind nectin-1 and alters junction-complex localization in hair follicles. This is cross-nectinopathy evidence, not direct evidence from NECTIN1-deficient appendages.
ectodermal cell CL:0000221 Cell Ontology (CL) Relation: this pathophysiological event involves this cell type This pathophysiological event involves ectodermal cell (CL:0000221). CL:0000221 is a cell type from the Cell Ontology. epithelial cell CL:0000066 Cell Ontology (CL) Relation: this pathophysiological event involves this cell type This pathophysiological event involves epithelial cell (CL:0000066). CL:0000066 is a cell type from the Cell Ontology.
NECTIN1 hgnc:9706 HUGO Gene Nomenclature Committee (hgnc) Relation: this pathophysiological event involves this gene This pathophysiological event involves NECTIN1 (hgnc:9706). hgnc:9706 is a gene from the HUGO Gene Nomenclature Committee.
calcium-independent cell-cell adhesion GO:0016338 Gene Ontology (GO) Relation: this pathophysiological event involves this biological process This pathophysiological event involves calcium-independent cell-cell adhesion (GO:0016338). GO:0016338 is a biological process from the Gene Ontology. adherens junction organization GO:0034332 Gene Ontology (GO) Relation: this pathophysiological event involves this biological process This pathophysiological event involves adherens junction organization (GO:0034332). GO:0034332 is a biological process from the Gene Ontology.
Show evidence (3 references)
PMID:10932188 SUPPORT Human Clinical
"we describe positional cloning of the gene responsible for an autosomal recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously ED4; ref. 2), which we identify as PVRL1, encoding nectin-1, an immunoglobulin (Ig)-related transmembrane cell-cell adhesion molecule that is part of the..."
Identifies PVRL1 as the causative adhesion-molecule gene for CLPED1.
PMID:25913853 SUPPORT Human Clinical
"Nectin-1 is a cell-cell adhesion molecule that is important for the initial step in the formation of adherens junctions and tight junctions; it is expressed in keratinocytes, neurons, and the developing face and palate"
Supports nectin-1 junction function and its face-and-palate expression.
PMID:20691405 SUPPORT In Vitro
"In patient keratinocytes, mutated nectin-4 lost its capability to bind nectin-1. Additionally, in discrete structures of the hair follicle, we found alterations of the membrane localization of nectin-afadin and cadherin-catenin complexes, which are essential for adherens junction formation"
Supports nectin-4/nectin-1 interaction in a related PVRL4 nectinopathy; it does not establish a NECTIN1 hair, tooth, nail, or sweat-gland chain.
Impaired Palate Shelf Elevation and Fusion
Mouse experiments show that the nectin-afadin axis is required for palate shelf elevation and fusion. Palatal epithelial loss of afadin induces high-penetrance cleft palate; loss of either Nectin1 or Nectin4 produces mild palate-closure defects at low penetrance, and combined loss produces severe cleft palate. Expression of human NECTIN1 W185X in mice causes cleft palate with greater penetrance than Nectin1 loss, suggesting a dominant interfering mechanism in that model.
ectodermal cell CL:0000221 Cell Ontology (CL) Relation: this pathophysiological event involves this cell type This pathophysiological event involves ectodermal cell (CL:0000221). CL:0000221 is a cell type from the Cell Ontology.
roof of mouth development GO:0060021 Gene Ontology (GO) Relation: this pathophysiological event involves this biological process This pathophysiological event involves roof of mouth development (GO:0060021). GO:0060021 is a biological process from the Gene Ontology.
roof of mouth UBERON:0007375 Uberon multi-species anatomy ontology (UBERON) Relation: this pathophysiological event occurs in this anatomical location This pathophysiological event occurs in roof of mouth (UBERON:0007375). UBERON:0007375 is an anatomical location from the Uberon multi-species anatomy ontology.
Show evidence (1 reference)
PMID:32554531 SUPPORT Model Organism
"Here, we use in utero lentiviral-mediated genetic approaches in mice to provide the first direct evidence that the nectin-afadin axis is essential for proper palate shelf elevation and fusion"
Directly supports the tissue-level palate mechanism in mice.
NECTIN1-Associated Ectodermal Dysplasia
Human CLPED1 reports document hypohidrotic ectodermal dysplasia with sparse, structurally abnormal hair, hypodontia, and cutaneous syndactyly. The precise NECTIN1-dependent tissue mechanism for each feature is not established. PVRL4-associated evidence supplies only cross-nectinopathy plausibility for hair follicles and separating digits; it does not establish NECTIN1 tooth- or sweat-gland mechanisms.
ectodermal cell CL:0000221 Cell Ontology (CL) Relation: this pathophysiological event involves this cell type This pathophysiological event involves ectodermal cell (CL:0000221). CL:0000221 is a cell type from the Cell Ontology.
NECTIN1 hgnc:9706 HUGO Gene Nomenclature Committee (hgnc) Relation: this pathophysiological event involves this gene This pathophysiological event involves NECTIN1 (hgnc:9706). hgnc:9706 is a gene from the HUGO Gene Nomenclature Committee.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"Clinical manifestations comprise a unique facial appearance with cleft lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers and/or toes, and in some cases, mental retardation"
Directly supports the human ectodermal-dysplasia and syndactyly phenotype cluster without specifying an intervening molecular chain.

Pathograph

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

13
Head and Neck 4
Cleft Lip HP:0410030 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Cleft lip (HP:0410030). HP:0410030 is a phenotype from the Human Phenotype Ontology.
Show evidence (3 references)
PMID:25913853 SUPPORT Human Clinical
"Clinical manifestations comprise a unique facial appearance with cleft lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers and/or toes, and in some cases, mental retardation"
Cleft lip/palate is listed as a cardinal clinical manifestation of CLPED1.
PMID:2167611 SUPPORT Human Clinical
"3 Brazilian brothers born to normal consanguineous parents (F = 1/16) and presenting ectodermal dysplasia, cleft lip/palate, mental retardation, syndactyly of fingers 2-3"
Original clinical delineation of the syndrome confirms cleft lip/palate as a defining feature in affected siblings.
ORPHA:3253 SUPPORT Other
"Zlotogora-Ogur syndrome is an ectodermal dysplasia syndrome characterized by hair, skin and teeth anomalies, facial dysmophism with cleft lip and palate, cutaneous syndactyly and, in some cases, intellectual disability."
The pinned Orphanet structured record independently includes cleft lip in the syndrome definition without assigning an unsupported frequency.
Cleft Palate HP:0000175 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Cleft palate (HP:0000175). HP:0000175 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"Clinical manifestations comprise a unique facial appearance with cleft lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers and/or toes, and in some cases, mental retardation"
Cleft palate is a cardinal manifestation of CLPED1.
Sparse Hair Sparse scalp hair HP:0002209 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Sparse scalp hair (HP:0002209). HP:0002209 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair and hypodontia"
Sparse, brittle hair is documented as a core ectodermal dysplasia feature in an affected patient.
Hypodontia HP:0000668 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Hypodontia (HP:0000668). HP:0000668 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair and hypodontia"
Hypodontia documented as part of the ectodermal dysplasia phenotype.
Integument 4
Pili Torti HP:0003777 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Pili torti (HP:0003777). HP:0003777 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"Scanning electron microscopic examination of the hair demonstrated pili torti and pili trianguli et canaliculi"
Pili torti confirmed on electron microscopy in an affected Japanese patient.
Nail Dystrophy HP:0008404 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Nail dystrophy (HP:0008404). HP:0008404 is a phenotype from the Human Phenotype Ontology.
Palmoplantar Keratoderma HP:0000982 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Palmoplantar keratoderma (HP:0000982), qualified as course progressive. HP:0000982 is a phenotype from the Human Phenotype Ontology.
Course: PROGRESSIVE
Hypohidrosis HP:0000966 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Hypohidrosis (HP:0000966). HP:0000966 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair and hypodontia"
The ectodermal dysplasia in CLPED1 is specifically described as hypohidrotic in this patient report.
Limbs 1
Cutaneous Syndactyly HP:0012725 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Cutaneous syndactyly (HP:0012725). HP:0012725 is a phenotype from the Human Phenotype Ontology.
Show evidence (2 references)
PMID:25913853 SUPPORT Human Clinical
"Clinical manifestations comprise a unique facial appearance with cleft lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers and/or toes, and in some cases, mental retardation"
Cutaneous syndactyly is listed as a cardinal clinical feature of CLPED1.
PMID:2167611 SUPPORT Human Clinical
"syndactyly of fingers 2-3"
Syndactyly specifically involving fingers 2-3 documented in original clinical delineation.
Nervous System 1
Intellectual Disability Mild intellectual disability HP:0001256 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Mild intellectual disability (HP:0001256). HP:0001256 is a phenotype from the Human Phenotype Ontology.
Show evidence (2 references)
PMID:25913853 SUPPORT Human Clinical
"cutaneous syndactyly of the fingers and mild mental retardation"
Mild intellectual disability documented in an affected patient, consistent with variable occurrence in the syndrome.
PMID:2167611 SUPPORT Human Clinical
"ectodermal dysplasia, cleft lip/palate, mental retardation, syndactyly of fingers 2-3"
Mental retardation listed as a feature in the original Zlotogora-Ogur syndrome delineation.
Other 3
Toe Syndactyly 2-3 toe syndactyly HP:0004691 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is 2-3 toe syndactyly (HP:0004691). HP:0004691 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"cutaneous syndactyly of the fingers and/or toes"
Toe syndactyly is explicitly included in the clinical phenotype description of CLPED1.
Ear Anomalies Abnormal ear morphology HP:0031703 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Abnormal ear morphology (HP:0031703). HP:0031703 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:2167611 SUPPORT Human Clinical
"accessory nipples, and ear anomalies"
Ear anomalies documented in the original Zlotogora-Ogur syndrome delineation by Rodini & Richieri-Costa.
Accessory Nipples Supernumerary nipple HP:0002558 Human Phenotype Ontology (HP) Relation: this clinical feature is this phenotype This clinical feature is Supernumerary nipple (HP:0002558). HP:0002558 is a phenotype from the Human Phenotype Ontology.
Show evidence (1 reference)
PMID:2167611 SUPPORT Human Clinical
"accessory nipples, and ear anomalies"
Accessory nipples documented in the three affected Brazilian brothers in the original Zlotogora-Ogur syndrome clinical delineation.
🧬

Genetic Associations

2
PVRL1 (NECTIN1) mutations
Gene: NECTIN1 hgnc:9706 HUGO Gene Nomenclature Committee (hgnc) Relation: this disease-associated gene is this gene This disease-associated gene is NECTIN1 (hgnc:9706). hgnc:9706 is a gene from the HUGO Gene Nomenclature Committee.
Autosomal recessive
Show evidence (3 references)
PMID:10932188 SUPPORT Human Clinical
"we describe positional cloning of the gene responsible for an autosomal recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously ED4; ref. 2), which we identify as PVRL1, encoding nectin-1, an immunoglobulin (Ig)-related transmembrane cell-cell adhesion molecule that is part of the..."
Landmark paper identifying PVRL1 as the causative gene through positional cloning.
PMID:25913853 SUPPORT Human Clinical
"All four PVRL1 mutations identified in cleft lip/palate-ectodermal dysplasia syndrome to date, including this study, resulted in truncated proteins that lack the transmembrane domain and intracellular domain of nectin-1, which is necessary to initiate the cell-cell adhesion process"
Confirms that all known mutations result in loss of the nectin-1 transmembrane and intracellular domains.
"NECTIN1 | HGNC:9706 | cleft lip/palate-ectodermal dysplasia syndrome | MONDO:0009151 | AR | Definitive"
ClinGen classifies the NECTIN1-cleft lip/palate-ectodermal dysplasia syndrome gene-disease relationship as definitive with autosomal recessive inheritance.
Variants (4)
W185X (c.554G>A)
Nonsense mutation creating a premature stop codon at position 185. Homozygosity causes CLPED1 on Margarita Island; heterozygosity is associated with non-syndromic cleft lip/palate in northern Venezuela.
Show evidence (1 reference)
PMID:11559849 SUPPORT Human Clinical
"Homozygosity for a nonsense mutation of PVRL1, W185X, results in an autosomal recessive CL/P syndrome on Margarita Island, CLPED1"
Directly supports the homozygous W185X-CLPED1 relationship on Margarita Island without asserting founder status.
Frameshift at Trp185
Single-base deletion at codon 185 (Trp185) causing a frameshift, identified in an Israeli family and predicted to truncate nectin-1.
Frameshift at Gly323
Single-base duplication at codon 323 (Gly323) causing a frameshift, identified in a Brazilian family and predicted to truncate nectin-1.
p.Arg134* (c.400C>T)
Novel homozygous nonsense mutation identified in a Japanese patient. Results in truncated nectin-1 lacking transmembrane and intracellular domains.
Show evidence (1 reference)
PMID:25913853 SUPPORT Human Clinical
"Mutation analysis of exon 2 of PVRL1 revealed a novel homozygous nonsense mutation, c.400C>T (p.Arg134*)"
Novel truncating mutation demonstrating allelic heterogeneity.
PVRL1 heterozygote risk for non-syndromic CL/P
Gene: NECTIN1 hgnc:9706 HUGO Gene Nomenclature Committee (hgnc) Relation: this disease-associated gene is this gene This disease-associated gene is NECTIN1 (hgnc:9706). hgnc:9706 is a gene from the HUGO Gene Nomenclature Committee. relationship_type: SUSCEPTIBILITY
Show evidence (1 reference)
PMID:11559849 SUPPORT Human Clinical
"Here we demonstrate highly significant association between heterozygosity for this mutation and sporadic, non-syndromic CL/P in northern Venezuela"
Directly supports W185X heterozygosity as a susceptibility relationship for non-syndromic cleft lip/palate in this population.
💊

Medical Actions

4
Cleft Lip/Palate Surgical Repair
Action: surgical procedureNCI Thesaurus (NCIT) Relation: this treatment is this clinical intervention This treatment is surgical procedure (NCIT:C15329). NCIT:C15329 is a clinical intervention from the NCI Thesaurus. Ontology label: Surgical Procedure NCIT:C15329
Platform: Surgery
Surgical cleft treatment and repair outcomes have been reported in a mixed ectodermal-dysplasia cohort. This evidence does not define a CLPED1-specific care protocol or establish syndrome-specific outcomes.
Show evidence (1 reference)
PMID:32864997 SUPPORT Human Clinical
"High fistula (8%) and velopharyngeal insufficiency (33%) rates reflected the predominance of bilateral complete forms"
This mixed ectodermal-dysplasia cohort reports outcomes after cleft repair, but it does not isolate CLPED1 patients.
Syndactyly Surgical Repair
Action: surgical procedureNCI Thesaurus (NCIT) Relation: this treatment is this clinical intervention This treatment is surgical procedure (NCIT:C15329). NCIT:C15329 is a clinical intervention from the NCI Thesaurus. Ontology label: Surgical Procedure NCIT:C15329
Platform: Surgery
Functional or reconstructive surgery may be considered for cutaneous syndactyly of the fingers or toes according to anatomy and functional need. Syndrome-specific outcome evidence is not available.
Dental Rehabilitation
Action: dental procedureNCI Thesaurus (NCIT) Relation: this treatment is this clinical intervention This treatment is dental procedure (NCIT:C38052). NCIT:C38052 is a clinical intervention from the NCI Thesaurus. Ontology label: Dental Procedure NCIT:C38052
Hypodontia requires individualized dental and prosthodontic rehabilitation; the appropriate approach depends on age, dentition, cleft anatomy, and craniofacial growth. CLPED1-specific outcome evidence is not available.
Genetic Counseling
Action: Genetic CounselingNCI Thesaurus (NCIT) Relation: this treatment is this clinical intervention This treatment is Genetic Counseling (NCIT:C15240). NCIT:C15240 is a clinical intervention from the NCI Thesaurus. NCIT:C15240
Genetic counseling should address autosomal recessive recurrence risk, familial variant testing, and reproductive options. The W185X heterozygote association with non-syndromic clefting in northern Venezuela should be presented separately from biallelic CLPED1 causation.
📊

Prevalence

1
Margarita Island, Venezuela
Unknown Not yet documented
CLPED1 was reported to have a high frequency on Margarita Island in the Caribbean Sea. Homozygous W185X causes CLPED1 in this population, but the cited evidence does not establish a founder event. No syndrome-specific prevalence estimate or carrier frequency is established. The cited study proposed, but did not demonstrate, heterozygote advantage against alpha-herpesvirus infection.
Show evidence (1 reference)
PMID:10932188 SUPPORT Human Clinical
"the high frequency of CLPED1 on Margarita Island in the Caribbean Sea might result from resistance of heterozygotes to infection by these viruses"
Documents the reported high frequency on Margarita Island and explicitly frames viral-resistance heterozygote advantage as a possibility.
{ }

Source YAML

click to show
name: Zlotogora-Ogur Syndrome
creation_date: '2026-04-24T00:00:00Z'
category: Mendelian
synonyms:
- Cleft lip/palate-ectodermal dysplasia syndrome
- CLPED1
- Zlotogora-Zilberman-Tenenbaum syndrome
- Margarita type ectodermal dysplasia
- Ectodermal dysplasia type 4
- Syndactyly-ectodermal dysplasia-cleft lip/palate
description: >
  Zlotogora-Ogur syndrome (CLPED1) is a rare autosomal recessive disorder caused
  by biallelic loss-of-function variants in the PVRL1 (NECTIN1) gene encoding
  nectin-1, an immunoglobulin-related transmembrane cell-cell adhesion molecule
  that is part of the NAP cell adhesion system. The syndrome is characterized by
  cleft lip and/or palate, ectodermal dysplasia (sparse hair with pili torti,
  hypodontia, nail dystrophy, and hypohidrosis), cutaneous syndactyly of fingers
  and/or toes, and in some cases intellectual disability. Nectin-1 is expressed
  in keratinocytes, neurons, and the developing face and palate, and is critical
  for the initial step in adherens junction and tight junction formation. The
  disorder was first described in families from Israel and Brazil and was later
  reported at high frequency on Margarita Island in Venezuela, where homozygous
  W185X causes CLPED1.
  A proposed heterozygote advantage against alpha-herpesvirus infection remains
  a population-genetic hypothesis rather than an established disease mechanism.
disease_term:
  preferred_term: cleft lip/palate-ectodermal dysplasia syndrome
  term:
    id: MONDO:0009151
    label: cleft lip/palate-ectodermal dysplasia syndrome
parents:
- Ectodermal dysplasia
- Orofacial cleft
- Autosomal recessive disease
inheritance:
- name: Autosomal recessive inheritance
  inheritance_term:
    preferred_term: Autosomal recessive inheritance
    term:
      id: HP:0000007
      label: Autosomal recessive inheritance
  description: >-
    CLPED1 is inherited in an autosomal recessive manner and is caused by
    biallelic pathogenic NECTIN1 variants.
  evidence:
  - reference: PMID:10932188
    reference_title: "Mutations of PVRL1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      we describe positional cloning of the gene responsible for an autosomal
      recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously
      ED4; ref. 2), which we identify as PVRL1
    explanation: >-
      The molecular discovery study explicitly identifies CLPED1 as an
      autosomal recessive PVRL1-associated syndrome.
pathophysiology:
- name: Loss of Nectin-1 Cell Adhesion
  biological_scale: MOLECULAR
  description: >
    PVRL1 (NECTIN1) encodes nectin-1, an immunoglobulin-related transmembrane
    cell-cell adhesion molecule that is part of the NAP cell adhesion system.
    Nectin-1 is important for the initial step in adherens-junction and
    tight-junction formation. The four PVRL1 variants reported through 2015
    produced truncated proteins lacking the transmembrane and intracellular
    domains required to initiate nectin-1-mediated adhesion. In the related
    PVRL4-associated ectodermal dysplasia-syndactyly syndrome, mutant nectin-4
    loses its ability to bind nectin-1 and alters junction-complex localization
    in hair follicles. This is cross-nectinopathy evidence, not direct evidence
    from NECTIN1-deficient appendages.
  cell_types:
  - preferred_term: ectodermal cell
    term:
      id: CL:0000221
      label: ectodermal cell
  - preferred_term: epithelial cell
    term:
      id: CL:0000066
      label: epithelial cell
  biological_processes:
  - preferred_term: calcium-independent cell-cell adhesion
    term:
      id: GO:0016338
      label: calcium-independent cell-cell adhesion
  - preferred_term: adherens junction organization
    term:
      id: GO:0034332
      label: adherens junction organization
  genes:
  - preferred_term: NECTIN1
    term:
      id: hgnc:9706
      label: NECTIN1
  evidence:
  - reference: PMID:10932188
    reference_title: "Mutations of PVRL1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      we describe positional cloning of the gene responsible for an autosomal
      recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously ED4;
      ref. 2), which we identify as PVRL1, encoding nectin-1, an immunoglobulin
      (Ig)-related transmembrane cell-cell adhesion molecule that is part of the
      NAP cell adhesion system
    explanation: >-
      Identifies PVRL1 as the causative adhesion-molecule gene for CLPED1.
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Nectin-1 is a cell-cell adhesion molecule that is important for the initial
      step in the formation of adherens junctions and tight junctions; it is
      expressed in keratinocytes, neurons, and the developing face and palate
    explanation: >-
      Supports nectin-1 junction function and its face-and-palate expression.
  - reference: PMID:20691405
    reference_title: "Mutations in PVRL4, encoding cell adhesion molecule nectin-4, cause ectodermal dysplasia-syndactyly syndrome."
    supports: SUPPORT
    evidence_source: IN_VITRO
    snippet: >-
      In patient keratinocytes, mutated nectin-4 lost its capability to bind
      nectin-1. Additionally, in discrete structures of the hair follicle, we
      found alterations of the membrane localization of nectin-afadin and
      cadherin-catenin complexes, which are essential for adherens junction
      formation
    explanation: >-
      Supports nectin-4/nectin-1 interaction in a related PVRL4 nectinopathy;
      it does not establish a NECTIN1 hair, tooth, nail, or sweat-gland chain.
  downstream:
  - target: Impaired Palate Shelf Elevation and Fusion
    description: >-
      Experimental loss of Nectin1 impairs palate closure, and combined loss of
      Nectin1 and Nectin4 produces severe cleft palate in mice.
    causal_link_type: DIRECT
    evidence:
    - reference: PMID:32554531
      reference_title: "Disruption of the nectin-afadin complex recapitulates features of the human cleft lip/palate syndrome CLPED1."
      supports: SUPPORT
      evidence_source: MODEL_ORGANISM
      snippet: >-
        We implicate Nectin1 and Nectin4 as being crucially involved, as loss of
        either induces a low penetrance of mild palate closure defects, while
        loss of both causes severe CP with a frequency similar to Afdn loss
      explanation: >-
        Directly supports a palate-closure consequence of experimental Nectin1
        loss; it does not establish a cleft-lip mechanism.
  - target: Cleft Lip
    description: >-
      Human genetic studies establish cleft lip/palate as part of
      PVRL1-associated CLPED1, but the specific cleft-lip developmental
      mechanism is not resolved by the cited evidence.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:10932188
      reference_title: "Mutations of PVRL1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        we describe positional cloning of the gene responsible for an autosomal
        recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously
        ED4; ref. 2), which we identify as PVRL1
      explanation: >-
        Direct human evidence links PVRL1 to the CL/P syndrome; the UNKNOWN edge
        avoids extending the palate-only mouse mechanism to cleft lip.
  - target: NECTIN1-Associated Ectodermal Dysplasia
    description: >-
      Human CLPED1 cases with homozygous PVRL1 loss-of-function variants have
      ectodermal dysplasia, but the intervening tissue mechanisms remain
      unresolved.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        Cleft lip/palate-ectodermal dysplasia syndrome is a rare, autosomal
        recessive disorder caused by homozygous loss-of-function mutations of
        the poliovirus receptor-like 1 (PVRL1) gene encoding nectin-1
      explanation: >-
        Establishes PVRL1 loss of function as the cause of the human syndrome;
        the edge is UNKNOWN because it does not resolve the appendage mechanism.
- name: Impaired Palate Shelf Elevation and Fusion
  biological_scale: TISSUE
  description: >
    Mouse experiments show that the nectin-afadin axis is required for palate
    shelf elevation and fusion. Palatal epithelial loss of afadin induces
    high-penetrance cleft palate; loss of either Nectin1 or Nectin4 produces
    mild palate-closure defects at low penetrance, and combined loss produces
    severe cleft palate. Expression of human NECTIN1 W185X in mice causes cleft
    palate with greater penetrance than Nectin1 loss, suggesting a dominant
    interfering mechanism in that model.
  cell_types:
  - preferred_term: ectodermal cell
    term:
      id: CL:0000221
      label: ectodermal cell
  biological_processes:
  - preferred_term: roof of mouth development
    term:
      id: GO:0060021
      label: roof of mouth development
  locations:
  - preferred_term: roof of mouth
    term:
      id: UBERON:0007375
      label: roof of mouth
  evidence:
  - reference: PMID:32554531
    reference_title: "Disruption of the nectin-afadin complex recapitulates features of the human cleft lip/palate syndrome CLPED1."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: >-
      Here, we use in utero lentiviral-mediated genetic approaches in mice to
      provide the first direct evidence that the nectin-afadin axis is essential
      for proper palate shelf elevation and fusion
    explanation: >-
      Directly supports the tissue-level palate mechanism in mice.
  downstream:
  - target: Cleft Palate
    description: Failed palate shelf elevation and fusion produces cleft palate.
    causal_link_type: DIRECT
    evidence:
    - reference: PMID:32554531
      reference_title: "Disruption of the nectin-afadin complex recapitulates features of the human cleft lip/palate syndrome CLPED1."
      supports: SUPPORT
      evidence_source: MODEL_ORGANISM
      snippet: >-
        palatal epithelial conditional loss of afadin (Afdn) - an obligate
        nectin- and actin-binding protein - induces a high penetrance of CP
      explanation: >-
        Directly supports cleft palate downstream of disruption of the
        nectin-afadin palate-fusion mechanism in mice; it does not support a
        cleft-lip edge.
- name: NECTIN1-Associated Ectodermal Dysplasia
  biological_scale: TISSUE
  description: >
    Human CLPED1 reports document hypohidrotic ectodermal dysplasia with sparse,
    structurally abnormal hair, hypodontia, and cutaneous syndactyly. The
    precise NECTIN1-dependent tissue mechanism for each feature is not
    established. PVRL4-associated evidence supplies only cross-nectinopathy
    plausibility for hair follicles and separating digits; it does not establish
    NECTIN1 tooth- or sweat-gland mechanisms.
  cell_types:
  - preferred_term: ectodermal cell
    term:
      id: CL:0000221
      label: ectodermal cell
  genes:
  - preferred_term: NECTIN1
    term:
      id: hgnc:9706
      label: NECTIN1
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Clinical manifestations comprise a unique facial appearance with cleft
      lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers
      and/or toes, and in some cases, mental retardation
    explanation: >-
      Directly supports the human ectodermal-dysplasia and syndactyly phenotype
      cluster without specifying an intervening molecular chain.
  downstream:
  - target: Sparse Hair
    description: >-
      Sparse hair is a documented component of the human ectodermal dysplasia;
      the intervening mechanism is not established.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair
        and hypodontia
      explanation: Directly documents sparse hair in a human CLPED1 case.
  - target: Pili Torti
    description: >-
      Pili torti is a documented hair-shaft abnormality; the intervening
      mechanism is not established.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        Scanning electron microscopic examination of the hair demonstrated pili
        torti and pili trianguli et canaliculi
      explanation: Directly documents pili torti in a human CLPED1 case.
  - target: Hypodontia
    description: >-
      Hypodontia is a documented component of the human ectodermal dysplasia;
      no NECTIN1-specific tooth-development chain is asserted.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair
        and hypodontia
      explanation: Directly documents hypodontia without inferring its mechanism.
  - target: Cutaneous Syndactyly
    description: >-
      Cutaneous syndactyly is a documented component of the human syndrome;
      the intervening digit-separation mechanism is not established.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        Clinical manifestations comprise a unique facial appearance with cleft
        lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers
        and/or toes, and in some cases, mental retardation
      explanation: Directly documents cutaneous syndactyly in human CLPED1.
  - target: Toe Syndactyly
    description: >-
      Toe syndactyly is documented in human CLPED1; the intervening mechanism is
      not established.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        cutaneous syndactyly of the fingers and/or toes
      explanation: Directly documents toe involvement in human CLPED1.
  - target: Hypohidrosis
    description: >-
      Hypohidrotic ectodermal dysplasia is documented in human CLPED1; no
      NECTIN1-specific sweat-gland mechanism is asserted.
    causal_link_type: UNKNOWN
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair
        and hypodontia
      explanation: >-
        Directly documents a hypohidrotic phenotype without inferring the
        sweat-gland causal chain.
phenotypes:
- name: Cleft Lip
  description: >
    Cleft lip is a defining clinical feature of the syndrome. The available
    cited case-series snippets do not quantify laterality.
  category: Clinical
  phenotype_term:
    preferred_term: Cleft lip
    term:
      id: HP:0410030
      label: Cleft lip
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Clinical manifestations comprise a unique facial appearance with cleft
      lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers
      and/or toes, and in some cases, mental retardation
    explanation: >-
      Cleft lip/palate is listed as a cardinal clinical manifestation of CLPED1.
  - reference: PMID:2167611
    reference_title: "Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the Zlotogora-Ogur syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      3 Brazilian brothers born to normal consanguineous parents (F = 1/16) and
      presenting ectodermal dysplasia, cleft lip/palate, mental retardation,
      syndactyly of fingers 2-3
    explanation: >-
      Original clinical delineation of the syndrome confirms cleft lip/palate
      as a defining feature in affected siblings.
  - reference: ORPHA:3253
    reference_title: "Cleft lip/palate-ectodermal dysplasia syndrome"
    supports: SUPPORT
    evidence_source: OTHER
    snippet: >-
      Zlotogora-Ogur syndrome is an ectodermal dysplasia syndrome characterized
      by hair, skin and teeth anomalies, facial dysmophism with cleft lip and
      palate, cutaneous syndactyly and, in some cases, intellectual disability.
    explanation: >-
      The pinned Orphanet structured record independently includes cleft lip in
      the syndrome definition without assigning an unsupported frequency.
- name: Cleft Palate
  description: >
    Cleft palate is reported as part of the cleft lip/palate phenotype in this
    syndrome; the cited evidence does not establish a frequency.
  category: Clinical
  phenotype_term:
    preferred_term: Cleft palate
    term:
      id: HP:0000175
      label: Cleft palate
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Clinical manifestations comprise a unique facial appearance with cleft
      lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers
      and/or toes, and in some cases, mental retardation
    explanation: Cleft palate is a cardinal manifestation of CLPED1.
- name: Sparse Hair
  description: >
    Sparse, brittle, fine, dry scalp hair reflecting ectodermal dysplasia. Hair
    shaft abnormalities include pili torti and pili trianguli et canaliculi.
  category: Clinical
  phenotype_term:
    preferred_term: Sparse scalp hair
    term:
      id: HP:0002209
      label: Sparse scalp hair
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair
      and hypodontia
    explanation: >-
      Sparse, brittle hair is documented as a core ectodermal dysplasia feature
      in an affected patient.
- name: Pili Torti
  description: >
    Twisted hair shafts (pili torti) demonstrated on scanning electron
    microscopy, a structural hair defect characteristic of ectodermal dysplasia.
  category: Clinical
  phenotype_term:
    preferred_term: Pili torti
    term:
      id: HP:0003777
      label: Pili torti
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Scanning electron microscopic examination of the hair demonstrated pili
      torti and pili trianguli et canaliculi
    explanation: >-
      Pili torti confirmed on electron microscopy in an affected Japanese patient.
- name: Hypodontia
  description: >
    Congenital absence of teeth (hypodontia) reflecting ectodermal involvement
    in tooth development.
  category: Clinical
  phenotype_term:
    preferred_term: Hypodontia
    term:
      id: HP:0000668
      label: Hypodontia
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair
      and hypodontia
    explanation: Hypodontia documented as part of the ectodermal dysplasia phenotype.
- name: Cutaneous Syndactyly
  description: >
    Cutaneous syndactyly of fingers and/or toes is a characteristic feature;
    finger 2-3 involvement was documented in the original Brazilian siblings.
  category: Clinical
  phenotype_term:
    preferred_term: Cutaneous syndactyly
    term:
      id: HP:0012725
      label: Cutaneous syndactyly
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Clinical manifestations comprise a unique facial appearance with cleft
      lip/palate, ectodermal dysplasia, cutaneous syndactyly of the fingers
      and/or toes, and in some cases, mental retardation
    explanation: >-
      Cutaneous syndactyly is listed as a cardinal clinical feature of CLPED1.
  - reference: PMID:2167611
    reference_title: "Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the Zlotogora-Ogur syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      syndactyly of fingers 2-3
    explanation: >-
      Syndactyly specifically involving fingers 2-3 documented in original
      clinical delineation.
- name: Nail Dystrophy
  description: >
    Nail dystrophy has been reported as a variable ectodermal feature. The
    available primary article is image-only in the local evidence pipeline, so
    no exact-text evidence block is attached.
  category: Clinical
  phenotype_term:
    preferred_term: Nail dystrophy
    term:
      id: HP:0008404
      label: Nail dystrophy
- name: Palmoplantar Keratoderma
  description: >
    Progressive palmoplantar keratoderma has been reported with age and may help
    distinguish CLPED1 from EEC syndrome in older patients. The available
    primary article is image-only in the local evidence pipeline, so no
    exact-text evidence block is attached.
  category: Clinical
  phenotype_term:
    preferred_term: Palmoplantar keratoderma
    term:
      id: HP:0000982
      label: Palmoplantar keratoderma
    clinical_course: PROGRESSIVE
- name: Toe Syndactyly
  description: >
    Cutaneous toe syndactyly is reported in addition to finger syndactyly. The
    cited evidence does not establish how often the 2-3 pattern occurs.
  category: Clinical
  phenotype_term:
    preferred_term: 2-3 toe syndactyly
    term:
      id: HP:0004691
      label: 2-3 toe syndactyly
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      cutaneous syndactyly of the fingers and/or toes
    explanation: >-
      Toe syndactyly is explicitly included in the clinical phenotype description
      of CLPED1.
- name: Ear Anomalies
  description: >
    Malformed ears and ear anomalies reported as variable features in affected
    individuals.
  category: Clinical
  phenotype_term:
    preferred_term: Abnormal ear morphology
    term:
      id: HP:0031703
      label: Abnormal ear morphology
  evidence:
  - reference: PMID:2167611
    reference_title: "Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the Zlotogora-Ogur syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      accessory nipples, and ear anomalies
    explanation: >-
      Ear anomalies documented in the original Zlotogora-Ogur syndrome
      delineation by Rodini & Richieri-Costa.
- name: Accessory Nipples
  description: >
    Supernumerary nipples reported as a variable associated finding in some
    affected individuals.
  category: Clinical
  phenotype_term:
    preferred_term: Supernumerary nipple
    term:
      id: HP:0002558
      label: Supernumerary nipple
  evidence:
  - reference: PMID:2167611
    reference_title: "Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the Zlotogora-Ogur syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      accessory nipples, and ear anomalies
    explanation: >-
      Accessory nipples documented in the three affected Brazilian brothers in
      the original Zlotogora-Ogur syndrome clinical delineation.
- name: Hypohidrosis
  description: >
    Reduced sweating capacity reflecting hypohidrotic ectodermal dysplasia.
  category: Clinical
  phenotype_term:
    preferred_term: Hypohidrosis
    term:
      id: HP:0000966
      label: Hypohidrosis
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      hypohidrotic ectodermal dysplasia with sparse, brittle, fine, dry hair
      and hypodontia
    explanation: >-
      The ectodermal dysplasia in CLPED1 is specifically described as
      hypohidrotic in this patient report.
- name: Intellectual Disability
  description: >
    Intellectual disability occurs in some but not all affected individuals;
    mild intellectual disability was documented in the cited Japanese patient.
  category: Clinical
  phenotype_term:
    preferred_term: Mild intellectual disability
    term:
      id: HP:0001256
      label: Mild intellectual disability
  evidence:
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      cutaneous syndactyly of the fingers and mild mental retardation
    explanation: >-
      Mild intellectual disability documented in an affected patient, consistent
      with variable occurrence in the syndrome.
  - reference: PMID:2167611
    reference_title: "Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the Zlotogora-Ogur syndrome."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      ectodermal dysplasia, cleft lip/palate, mental retardation, syndactyly
      of fingers 2-3
    explanation: >-
      Mental retardation listed as a feature in the original Zlotogora-Ogur
      syndrome delineation.
genetic:
- name: PVRL1 (NECTIN1) mutations
  features: >
    Autosomal recessive loss-of-function mutations in PVRL1 (now NECTIN1),
    encoding nectin-1, cause Zlotogora-Ogur syndrome. The four variants reported
    through 2015 produced truncated proteins lacking the transmembrane and
    intracellular domains. Homozygous W185X causes CLPED1 on Margarita Island;
    heterozygosity was associated with sporadic non-syndromic cleft lip/palate
    in northern Venezuela. The cited evidence does not establish W185X as a
    founder variant. The proposal that viral resistance maintains this allele
    is an untested heterozygote-advantage hypothesis.
  inheritance:
  - name: Autosomal recessive
    evidence:
    - reference: PMID:10932188
      reference_title: "Mutations of PVRL1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        we describe positional cloning of the gene responsible for an autosomal
        recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously
        ED4; ref. 2), which we identify as PVRL1
      explanation: Autosomal recessive inheritance established in the gene identification paper.
  gene_term:
    preferred_term: NECTIN1
    term:
      id: hgnc:9706
      label: NECTIN1
  variants:
  - name: W185X (c.554G>A)
    description: >-
      Nonsense mutation creating a premature stop codon at position 185.
      Homozygosity causes CLPED1 on Margarita Island; heterozygosity is
      associated with non-syndromic cleft lip/palate in northern Venezuela.
    evidence:
    - reference: PMID:11559849
      reference_title: "Mutation of PVRL1 is associated with sporadic, non-syndromic cleft lip/palate in northern Venezuela."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        Homozygosity for a nonsense mutation of PVRL1, W185X, results in an
        autosomal recessive CL/P syndrome on Margarita Island, CLPED1
      explanation: >-
        Directly supports the homozygous W185X-CLPED1 relationship on Margarita
        Island without asserting founder status.
  - name: Frameshift at Trp185
    description: >-
      Single-base deletion at codon 185 (Trp185) causing a frameshift,
      identified in an Israeli family and predicted to truncate nectin-1.
  - name: Frameshift at Gly323
    description: >-
      Single-base duplication at codon 323 (Gly323) causing a frameshift,
      identified in a Brazilian family and predicted to truncate nectin-1.
  - name: p.Arg134* (c.400C>T)
    description: >-
      Novel homozygous nonsense mutation identified in a Japanese patient.
      Results in truncated nectin-1 lacking transmembrane and intracellular
      domains.
    evidence:
    - reference: PMID:25913853
      reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
      supports: SUPPORT
      evidence_source: HUMAN_CLINICAL
      snippet: >-
        Mutation analysis of exon 2 of PVRL1 revealed a novel homozygous nonsense
        mutation, c.400C>T (p.Arg134*)
      explanation: Novel truncating mutation demonstrating allelic heterogeneity.
  evidence:
  - reference: PMID:10932188
    reference_title: "Mutations of PVRL1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      we describe positional cloning of the gene responsible for an autosomal
      recessive CL/P-ectodermal dysplasia (ED) syndrome (CLPED1; previously
      ED4; ref. 2), which we identify as PVRL1, encoding nectin-1, an
      immunoglobulin (Ig)-related transmembrane cell-cell adhesion molecule
      that is part of the NAP cell adhesion system
    explanation: >-
      Landmark paper identifying PVRL1 as the causative gene through positional
      cloning.
  - reference: PMID:25913853
    reference_title: "Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene underlies cleft lip/palate-ectodermal dysplasia syndrome in an Asian patient."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      All four PVRL1 mutations identified in cleft lip/palate-ectodermal
      dysplasia syndrome to date, including this study, resulted in truncated
      proteins that lack the transmembrane domain and intracellular domain of
      nectin-1, which is necessary to initiate the cell-cell adhesion process
    explanation: >-
      Confirms that all known mutations result in loss of the nectin-1
      transmembrane and intracellular domains.
  - reference: CGGV:assertion_c1264fce-e800-4f7d-8395-543d2e266d02-2024-06-20T160000.000Z
    reference_title: "NECTIN1 / cleft lip/palate-ectodermal dysplasia syndrome (Definitive)"
    supports: SUPPORT
    evidence_source: OTHER
    snippet: "NECTIN1 | HGNC:9706 | cleft lip/palate-ectodermal dysplasia syndrome | MONDO:0009151 | AR | Definitive"
    explanation: ClinGen classifies the NECTIN1-cleft lip/palate-ectodermal dysplasia syndrome gene-disease relationship as definitive with autosomal recessive inheritance.
- name: PVRL1 heterozygote risk for non-syndromic CL/P
  relationship_type: SUSCEPTIBILITY
  features: >
    Heterozygosity for the W185X variant in PVRL1 is significantly associated
    with sporadic, non-syndromic cleft lip with or without cleft palate in
    northern Venezuela. This susceptibility association is distinct from the
    biallelic causal relationship for CLPED1.
  gene_term:
    preferred_term: NECTIN1
    term:
      id: hgnc:9706
      label: NECTIN1
  evidence:
  - reference: PMID:11559849
    reference_title: "Mutation of PVRL1 is associated with sporadic, non-syndromic cleft lip/palate in northern Venezuela."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Here we demonstrate highly significant association between heterozygosity
      for this mutation and sporadic, non-syndromic CL/P in northern Venezuela
    explanation: >-
      Directly supports W185X heterozygosity as a susceptibility relationship
      for non-syndromic cleft lip/palate in this population.
prevalence:
- population: Margarita Island, Venezuela
  measure_type: UNKNOWN
  prevalence_class: NOT_YET_DOCUMENTED
  notes: >-
    CLPED1 was reported to have a high frequency on Margarita Island in the
    Caribbean Sea. Homozygous W185X causes CLPED1 in this population, but the
    cited evidence does not establish a founder event. No syndrome-specific
    prevalence estimate or carrier frequency is established. The cited study
    proposed, but did not demonstrate, heterozygote advantage against
    alpha-herpesvirus infection.
  evidence:
  - reference: PMID:10932188
    reference_title: "Mutations of PVRL1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      the high frequency of CLPED1 on Margarita Island in the Caribbean Sea
      might result from resistance of heterozygotes to infection by these viruses
    explanation: >-
      Documents the reported high frequency on Margarita Island and explicitly
      frames viral-resistance heterozygote advantage as a possibility.
treatments:
- name: Cleft Lip/Palate Surgical Repair
  description: >
    Surgical cleft treatment and repair outcomes have been reported in a mixed
    ectodermal-dysplasia cohort. This evidence does not define a CLPED1-specific
    care protocol or establish syndrome-specific outcomes.
  therapeutic_modality: SURGERY
  treatment_term:
    preferred_term: surgical procedure
    term:
      id: NCIT:C15329
      label: Surgical Procedure
  evidence:
  - reference: PMID:32864997
    reference_title: "Cleft Lip and Palate in Ectodermal Dysplasia."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      High fistula (8%) and velopharyngeal insufficiency (33%) rates reflected
      the predominance of bilateral complete forms
    explanation: >-
      This mixed ectodermal-dysplasia cohort reports outcomes after cleft repair,
      but it does not isolate CLPED1 patients.
- name: Syndactyly Surgical Repair
  description: >
    Functional or reconstructive surgery may be considered for cutaneous
    syndactyly of the fingers or toes according to anatomy and functional need.
    Syndrome-specific outcome evidence is not available.
  therapeutic_modality: SURGERY
  treatment_term:
    preferred_term: surgical procedure
    term:
      id: NCIT:C15329
      label: Surgical Procedure
- name: Dental Rehabilitation
  description: >
    Hypodontia requires individualized dental and prosthodontic rehabilitation;
    the appropriate approach depends on age, dentition, cleft anatomy, and
    craniofacial growth. CLPED1-specific outcome evidence is not available.
  treatment_term:
    preferred_term: dental procedure
    term:
      id: NCIT:C38052
      label: Dental Procedure
- name: Genetic Counseling
  description: >
    Genetic counseling should address autosomal recessive recurrence risk,
    familial variant testing, and reproductive options. The W185X
    heterozygote association with non-syndromic clefting in northern Venezuela
    should be presented separately from biallelic CLPED1 causation.
  treatment_term:
    preferred_term: Genetic Counseling
    term:
      id: NCIT:C15240
      label: Genetic Counseling
discussions:
- discussion_id: clped1_w185x_mouse_human_allele_mechanism
  kind: HUMAN_MODEL_MISMATCH
  status: OPEN
  prompt: >-
    Does the dominant-interfering effect of NECTIN1 W185X in mouse palatal
    epithelium explain human CLPED1, which is inherited as a recessive disorder?
  rationale: >-
    W185X expression produces cleft palate with greater penetrance than Nectin1
    loss in mice,
    suggesting dominant interference, whereas human syndromic disease requires
    biallelic pathogenic variants. The mouse result supports a role for the
    nectin-afadin axis but does not establish the allelic mechanism in human
    palate or ectodermal appendages.
  attaches_to:
  - pathophysiology#Impaired Palate Shelf Elevation and Fusion
  evidence:
  - reference: PMID:32554531
    reference_title: "Disruption of the nectin-afadin complex recapitulates features of the human cleft lip/palate syndrome CLPED1."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: >-
      expression of the human disease mutant NECTIN1W185X causes CP with greater
      penetrance than Nectin1 loss, suggesting this alteration may drive CP via
      a dominant interfering mechanism
    explanation: >-
      The mouse study explicitly identifies the allele-mechanism mismatch that
      remains unresolved in the recessively inherited human syndrome.
- discussion_id: clped1_natural_history_and_management_evidence
  kind: KNOWLEDGE_GAP
  status: OPEN
  prompt: >-
    What are the syndrome-specific phenotype frequencies, natural history, and
    outcomes of cleft, limb, dental, dermatologic, and developmental management?
  rationale: >-
    Published CLPED1 evidence is dominated by small pedigrees and case reports.
    The entry therefore avoids unsupported frequency labels and does not infer
    treatment efficacy from citations that only establish the corresponding
    phenotype. Cached exact-text sources directly support hypodontia and dry
    hair, but not separate dry-skin, sparse-eyebrow, nail-dysplasia,
    palmoplantar-keratoderma, or broader dental-morphology assertions, nor a
    congenital-to-progressive natural-history sequence. Mixed
    ectodermal-dysplasia cohorts provide only indirect cleft-management evidence.
  attaches_to:
  - disease#Zlotogora-Ogur Syndrome
datasets:
📚

References & Deep Research

Deep Research

1
Falcon
Zlotogora–Ogur Syndrome (CLPED1) — Comprehensive Disease Characteristics Report
Edison Scientific Literature 41 citations 2026-04-24T18:23:33.485768

Zlotogora–Ogur Syndrome (CLPED1) — Comprehensive Disease Characteristics Report

Executive summary

Zlotogora–Ogur syndrome is now generally considered part of cleft lip/palate–ectodermal dysplasia syndrome 1 (CLPED1) (also historically called Margarita Island ectodermal dysplasia / Margarita Island type), a rare autosomal recessive disorder characterized by orofacial clefting, ectodermal dysplasia (hair/skin/teeth/nails/sweat gland abnormalities), and limb anomalies (syndactyly), with variable neurodevelopmental involvement. The condition is caused by biallelic loss-of-function variants in PVRL1 (NECTIN1), encoding the cell–cell adhesion molecule nectin-1. (suzuki2000mutationsofpvrl1 pages 1-1, zlotogora1994syndactylyectodermaldysplasia pages 2-3, suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3)


1. Disease information

1.1 Disease overview (definition)

Clinically, the syndrome was delineated as a pleiotropic association of cleft lip/palate, syndactyly, ectodermal dysplasia, and (in some reports) psychomotor retardation/intellectual disability. A widely cited clinical synthesis reports: “The summary of the clinical manifestations is based on 31 patients affected with the syndrome observed from the age of 4 months to 65 years”. (zlotogora1994syndactylyectodermaldysplasia pages 1-2)

Molecularly, the disorder corresponds to autosomal recessive cleft lip/palate–ectodermal dysplasia (CLPED1) due to PVRL1/NECTIN1 mutations. (suzuki2000mutationsofpvrl1 pages 1-1, suzuki2000mutationsofpvrl1 pages 1-3)

1.2 Key identifiers

  • OMIM (preferred, molecular-era): 225060 is used for CLPED1 / Margarita Island type in later reviews and tables. (visinoni2009ectodermaldysplasiasclinical pages 2-3, ganske2021cleftlipand pages 1-2)
  • OMIM (historical / inconsistent in older literature): Older sources cite MIM 225000 / 22500 / 225060 for overlapping clinical entities; an ED review notes reassignment of the former Zlotogora–Ogur number. (zlotogora1994syndactylyectodermaldysplasia pages 3-4, visinoni2009ectodermaldysplasiasclinical pages 2-3)
  • Gene: PVRL1 (NECTIN1) at 11q23.3. (suzuki2000mutationsofpvrl1 pages 1-1, ganske2021cleftlipand pages 1-2)
  • MONDO / MeSH / ICD-10/ICD-11 / Orphanet: Not identified within the retrieved evidence set; mapping should be confirmed via MONDO/Orphanet/MeSH/ICD registries outside this corpus.

1.3 Synonyms and alternative names

Commonly used names in the literature include: * Zlotogora–Ogur syndrome * Syndactyly, ectodermal dysplasia, and cleft lip/palate * Cleft lip/palate–ectodermal dysplasia syndrome * CLPED1 * Margarita Island ectodermal dysplasia / Margarita Island type These synonym relationships are made explicit in molecular-era CLPED1 work and ED reviews. (suzuki2000mutationsofpvrl1 pages 1-1, visinoni2009ectodermaldysplasiasclinical pages 2-3, ganske2021cleftlipand pages 1-2)

1.4 Evidence source type (patient-level vs aggregated)

Evidence is derived from: * Patient-level case reports/series (human clinical) describing multiple affected families and syndromic features (rodini1990autosomalrecessiveectodermal pages 3-4, rodini1990autosomalrecessiveectodermal pages 1-3) * Aggregated clinical synthesis (human clinical summary of multiple reports; 31 cases across wide age range) (zlotogora1994syndactylyectodermaldysplasia pages 1-2) * Molecular genetics (human genetic studies defining PVRL1/NECTIN1 as causal) (suzuki2000mutationsofpvrl1 pages 1-1, suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3) * Experimental model systems (mouse/in vitro) supporting a nectin–afadin developmental mechanism relevant to palate/periderm biology (lough2020disruptionofthe pages 1-3, lough2020disruptionofthe pages 3-5)


2. Etiology

2.1 Disease causal factors

Primary cause: biallelic pathogenic variants in PVRL1 (NECTIN1), encoding nectin-1, a cell–cell adhesion molecule. * Molecular definition: CLPED1 is described as an “autosomal recessive CL/P-ectodermal dysplasia (CLPED1; previously ED4)” and the locus is identified as PVRL1, “encoding nectin-1”. (suzuki2000mutationsofpvrl1 pages 1-1)

2.2 Risk factors

Genetic risk factors (causal)

  • Autosomal recessive inheritance is supported by repeated parental consanguinity in reported families: “The occurrence of consanguinity in the 3 reported families is consistent with autosomal recessive inheritance.” (rodini1990autosomalrecessiveectodermal pages 3-4)
  • Multiple families show affected individuals homozygous for pathogenic PVRL1 alleles with heterozygous parents: “In each case the affected patients were homozygous and their parents were heterozygous for the mutant alleles.” (suzuki2000mutationsofpvrl1 pages 1-3)

Environmental risk factors

No established environmental risk factors for CLPED1/Zlotogora–Ogur syndrome were identified in the retrieved evidence.

2.3 Protective factors

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

2.4 Gene–environment interactions

No gene–environment interaction evidence was identified in the retrieved corpus.


3. Phenotypes

3.1 Core phenotype spectrum (human)

Across the clinical synthesis and primary reports, major features include: * Orofacial clefting: “Cleft lip/palate is present in most patients.” (zlotogora1994syndactylyectodermaldysplasia pages 1-2) * Syndactyly: “Cutaneous syndactyly is frequently present in fingers 2-3-4” and “In the feet syndactyly of toes 2-3 is usually present.” (zlotogora1994syndactylyectodermaldysplasia pages 1-2) * Ectodermal dysplasia: sparse/short hair with structural defects (“pili torti” / “kinky hair”), dental anomalies, nail anomalies, hypohidrosis, and progressive palmoplantar hyperkeratosis. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3) * Neurodevelopment: variable impairment; “Mental status may be impaired” and family-to-family differences were noted. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3)

The syndrome demonstrates marked variable expressivity: “The variability of the syndrome is evident…”. (zlotogora1994syndactylyectodermaldysplasia pages 1-2)

3.2 Phenotype characteristics (onset, severity, progression, frequency)

  • Onset: structural anomalies (clefting, syndactyly) are congenital. (rodini1990autosomalrecessiveectodermal pages 1-3)
  • Progression: palmoplantar hyperkeratosis is progressive, with specific appearance in childhood in at least one case. (zlotogora1994syndactylyectodermaldysplasia pages 1-2)
  • Neurodevelopmental severity: ranges from normal cognition to intellectual disability depending on family/allele context. (zlotogora1994syndactylyectodermaldysplasia pages 2-3)
  • Mortality: some sibships include neonatal/early childhood deaths of presumed affected individuals; “Some of the affected children died neonatally or at a young age” with cause “unknown.” (zlotogora1994syndactylyectodermaldysplasia pages 2-3)

3.3 Quality-of-life impact

Formal QoL instruments (EQ-5D/SF-36/PROMIS) were not identified in the retrieved evidence for CLPED1 specifically. However, the phenotype implies significant functional burden (feeding/speech/hearing/dental/dermatologic and surgical needs).

3.4 Suggested HPO terms

A curated phenotype-to-HPO mapping table is provided in Artifact-01.

Phenotype / clinical description Suggested HPO term(s) Typical onset Frequency / variability notes Key supporting citations
Cleft lip and/or cleft palate; often bilateral, but some affected individuals may lack overt clefting and instead have philtrum/uvula anomalies Cleft upper lip HP:0000204; Cleft palate HP:0000175 Congenital Present in most patients; not fully penetrant across all reported families; neonatal deaths in some sibs with clefting were reported (zlotogora1994syndactylyectodermaldysplasia pages 1-2, rodini1990autosomalrecessiveectodermal pages 1-3)
Cutaneous syndactyly of fingers, especially 2-3-4; classic reports also note 2-3 finger involvement 2-3 finger syndactyly HP:0006101; Cutaneous syndactyly of fingers HP:0010709 Congenital Frequently present; variable severity and exact digits involved between families (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3, rodini1990autosomalrecessiveectodermal pages 1-3)
Toe syndactyly, especially 2-3 toes 2-3 toe syndactyly HP:0001780 Congenital Usually present in reported cases, though variable and sometimes less emphasized than hand findings (zlotogora1994syndactylyectodermaldysplasia pages 1-2, rodini1990autosomalrecessiveectodermal pages 1-3)
Sparse, short, kinky hair; hair-shaft defects including pili torti; brittle/fine hair in later molecularly confirmed case Sparse hair HP:0008070; Pili torti HP:0003792; Abnormal hair texture HP:0011359 Congenital / early childhood Common ectodermal feature; one review noted progressive scalp involvement with complete alopecia by the fifth decade in some patients (zlotogora1994syndactylyectodermaldysplasia pages 1-2, yoshida2015novelhomozygousmutation pages 1-3)
Hypohidrosis / reduced sweating with generally preserved heat tolerance Hypohidrosis HP:0000975 Childhood or lifelong Reported in most but not all patients; variable severity (zlotogora1994syndactylyectodermaldysplasia pages 2-3, rodini1990autosomalrecessiveectodermal pages 1-3)
Progressive palmar and plantar hyperkeratosis / palmoplantar keratoderma Palmoplantar keratoderma HP:0000982; Hyperkeratosis HP:0000962 Childhood; may become more evident with age Progressive feature; one report noted appearance around age 4 years; useful in differential diagnosis versus EEC in older patients (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3)
Dental anomalies: delayed eruption, microdontia, hypodontia, anodontia Hypodontia HP:0000670; Anodontia HP:0000674; Microdontia HP:0000691; Delayed eruption of teeth HP:0000684 Childhood Very common ectodermal finding; severity ranges from delayed eruption to absent teeth in adults (zlotogora1994syndactylyectodermaldysplasia pages 2-3, rodini1990autosomalrecessiveectodermal pages 1-3)
Nail anomalies / brittle nails / onychodysplasia Nail dysplasia HP:0002164; Brittle nails HP:0001808 Childhood Variable; nails can be normal in some affected individuals (zlotogora1994syndactylyectodermaldysplasia pages 2-3, rodini1990autosomalrecessiveectodermal pages 1-3)
Intellectual disability / mental retardation and delayed psychomotor development Intellectual disability HP:0001249; Global developmental delay HP:0001263 Infancy / childhood Variable across families; initially thought obligatory, but later reports documented normal intelligence in some families; may reflect variable expressivity (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3, rodini1990autosomalrecessiveectodermal pages 1-3)
Ear anomalies / malformed ears / preauricular pit Abnormality of the ear HP:0000598; Preauricular pit HP:0004467 Congenital Recurrent but variably reported; malformed ears emphasized in early descriptions (rodini1990autosomalrecessiveectodermal pages 3-4, rodini1990autosomalrecessiveectodermal pages 1-3)
Hearing loss / deafness Hearing impairment HP:0000365 Childhood Variable between families; present in some pedigrees but absent in others (rodini1990autosomalrecessiveectodermal pages 3-4, zlotogora1994syndactylyectodermaldysplasia pages 2-3)
Genitourinary / renal anomalies Genitourinary abnormality HP:0000078; Renal abnormality HP:0000077 Congenital Inconsistent finding; reported in some families/case summaries, absent in others (rodini1990autosomalrecessiveectodermal pages 3-4, zlotogora1994syndactylyectodermaldysplasia pages 2-3)
Accessory nipples / nipple anomalies Supernumerary nipple HP:0100807 Congenital Reported in several patients/families, but may represent a variable associated finding rather than a core feature (rodini1990autosomalrecessiveectodermal pages 3-4, rodini1990autosomalrecessiveectodermal pages 1-3)
Dry skin / eczematous or dermatitis-like skin changes Xerosis HP:0000963; Eczema HP:0000964 Infancy / childhood Reported as part of ectodermal dysplasia spectrum; later molecularly confirmed case had treatment for eczematous skin/atopic dermatitis from infancy (rodini1990autosomalrecessiveectodermal pages 3-4, yoshida2015novelhomozygousmutation pages 1-3)
Early death (neonatal death or death in early childhood) in some affected sibships Neonatal death HP:0003811; Sudden death in infancy / early death HP:0001522 Neonatal / infancy Not universal; several reports describe neonatal or early-childhood deaths among presumed affected sibs, with cause often unknown (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3, rodini1990autosomalrecessiveectodermal pages 1-3)

Table: This table summarizes the core and variably reported phenotypes of Zlotogora-Ogur syndrome / CLPED1, with suggested HPO mappings, typical timing, and brief notes on expressivity. It is useful for knowledge-base curation and phenotype-to-ontology annotation.


4. Genetic / molecular information

4.1 Causal gene

PVRL1 (NECTIN1) encodes nectin-1, an immunoglobulin superfamily adhesion protein. * Molecular identification: “which we identify as PVRL1, encoding nectin-1, an immunoglobulin (Ig)-related transmembrane cell-cell adhesion molecule.” (suzuki2000mutationsofpvrl1 pages 1-1)

4.2 Pathogenic variants (examples with evidence)

From the gene-discovery study and subsequent case report: * Trp185Ter (W185X): “At codon Trp185 (TGG), a homozygous nonsense mutation (TAG) was found…” (suzuki2000mutationsofpvrl1 pages 1-3) * Frameshift at codon 185 (single-base deletion at Trp185): “a homozygous frameshift (TG–)…” (suzuki2000mutationsofpvrl1 pages 1-3) * Frameshift at Gly323 (single-base duplication): “At codon Gly323 (GGT), a homozygous frameshift (GGTT)…” (suzuki2000mutationsofpvrl1 pages 1-3) * c.400C>T (p.Arg134*): “Novel homozygous mutation, c.400C>T (p.Arg134*), in the PVRL1 gene…” (yoshida2015novelhomozygousmutation pages 1-3)

4.3 Functional consequences

The truncating variants are predicted to abrogate nectin-1’s intracellular interactions and adhesion signaling. * Mechanism statement: the truncating mutations “would truncate…nectin-1…thereby abolishing interaction with 1-afadin and thus abrogating…cell-cell adhesion.” (suzuki2000mutationsofpvrl1 pages 1-3)

4.4 Modifier genes / epigenetics / chromosomal abnormalities

No validated modifier genes or epigenetic signatures were identified in the retrieved CLPED1-specific evidence. Karyotype was reported normal in a classic clinical family. (rodini1990autosomalrecessiveectodermal pages 3-4)


5. Environmental information

No specific environmental/lifestyle/infectious contributors were identified in the retrieved evidence; CLPED1 is primarily a monogenic Mendelian disorder in the reviewed sources.


6. Mechanism / pathophysiology

6.1 Current understanding (nectin–afadin axis in epithelial morphogenesis)

A convergent theme is disruption of adherens junction formation and epithelial adhesion in craniofacial and ectodermal tissues.

  • PVRL1/NECTIN1 is a cell–cell adhesion molecule; truncating variants disrupt interaction with afadin (the actin-binding scaffolding partner). (suzuki2000mutationsofpvrl1 pages 1-3)
  • PVRL1 expression during development is reported in tissues relevant to CLPED1 phenotypes (palatal shelves, tooth buds, skin epithelium). (suzuki2000mutationsofpvrl1 pages 1-3)

6.2 Causal chain (conceptual)

  1. Biallelic PVRL1 loss-of-function → truncated nectin-1 lacking proper intracellular signaling/anchoring. (suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3)
  2. Loss of nectin–afadin linkage → impaired adherens-junction assembly/maintenance and epithelial cohesion in developing palate/periderm and ectodermal appendage primordia. (suzuki2000mutationsofpvrl1 pages 1-3, lough2020disruptionofthe pages 3-5)
  3. Developmental morphogenesis failures → palatal shelf fusion defects (clefting) and ectodermal derivative abnormalities (hair/teeth/nails/sweat glands), plus limb webbing/syndactyly. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, rodini1990autosomalrecessiveectodermal pages 1-3)

6.3 Pathways and ontology suggestions

  • Cell adhesion / adherens junction organization: GO:0034332 was invoked in 2024 protein-network analyses connecting afadin and nectins to adherens junction organization. (awotoye2024damagingmutationsin pages 9-13)
  • Additional plausible GO terms for curation (not directly asserted in the texts but aligned with the described mechanism): “cell-cell adhesion” and “adherens junction assembly.”

6.4 Recent developments (prioritize 2023–2024)

Recent work does not primarily expand CLPED1 patient series, but refines mechanistic understanding of the same junctional module:

(a) 2023 mechanobiology (preprint; protein–protein interaction under force): Afadin PDZ–nectin-1 binding exhibits force-stabilized behavior. The preprint reports short solution lifetimes (“bond lifetimes of 1.2…s for the nectin-1…ICDs”) and concludes “PDZ domains can serve as force-responsive mechanical anchors at cell-cell adhesion complexes.” (vachharajani2023pdzdomainsfrom pages 1-3)

(b) 2024 human genetics and network biology (peer-reviewed): AFDN (afadin) damaging variants were proposed to contribute to nonsyndromic cleft risk, with analyses highlighting AFADIN’s direct interactions with nectins and a reported association of afadin–nectin interaction networks with CLPED biology (FDR reported in the paper). (awotoye2024damagingmutationsin pages 13-16, awotoye2024damagingmutationsin pages 9-13)

Evidence-type labeling: * (a) computational + single-molecule biophysics; preprint (bioRxiv) (vachharajani2023pdzdomainsfrom pages 1-3) * (b) human genetics cohorts + computational structural/network analyses; peer-reviewed primary research (awotoye2024damagingmutationsin pages 13-16, awotoye2024damagingmutationsin pages 9-13)


7. Anatomical structures affected

Based on the phenotype profile: * Craniofacial: lip and palate (UBERON: lip/palate structures), dental primordia/teeth. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3) * Integumentary system: skin, hair follicles, sweat glands, nails. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, zlotogora1994syndactylyectodermaldysplasia pages 2-3) * Limbs: fingers/toes (cutaneous syndactyly). (zlotogora1994syndactylyectodermaldysplasia pages 1-2) * Potential additional systems: auditory system (hearing loss), renal/genitourinary anomalies variably. (rodini1990autosomalrecessiveectodermal pages 3-4)

Cell types (CL suggestions) most directly implicated by the mechanism include epithelial cells of palatal shelves and epidermis/periderm (supported mechanistically by mouse epithelial perturbation studies). (lough2020disruptionofthe pages 3-5)

Subcellular components (GO Cellular Component) implicated: adherens junction complexes and associated cytoskeleton (supported conceptually; afadin/nectin are junctional/cytoskeletal linkers). (suzuki2000mutationsofpvrl1 pages 1-3, vachharajani2023pdzdomainsfrom pages 1-3)


8. Temporal development (onset and progression)

  • Congenital onset of clefting and syndactyly is typical. (rodini1990autosomalrecessiveectodermal pages 1-3)
  • Progressive dermatologic manifestations can emerge and worsen with age; palmoplantar hyperkeratosis is described as progressive, and alopecia can develop later in life in some individuals. (zlotogora1994syndactylyectodermaldysplasia pages 1-2)
  • Neurodevelopmental course is variable (family-dependent). (zlotogora1994syndactylyectodermaldysplasia pages 2-3)

9. Inheritance and population

9.1 Inheritance

Autosomal recessive inheritance is consistently supported: * “The syndrome is inherited as an autosomal recessive trait.” (zlotogora1994syndactylyectodermaldysplasia pages 2-3) * Multiple reports cite parental consanguinity: “In all the families reported up to now the parents of the affected children were related.” (zlotogora1994syndactylyectodermaldysplasia pages 2-3)

9.2 Epidemiology

Syndrome-specific prevalence/incidence was not identified in the retrieved evidence.

Available quantitative proxies: * A clinical synthesis aggregated 31 patients across reports. (zlotogora1994syndactylyectodermaldysplasia pages 1-2) * In a large ED clinic cohort (not CLPED1-specific), 24/170 (14%) ED patients had CL/P. (ganske2021cleftlipand pages 2-4)

9.3 Population genetics / founder effects

Repeated consanguinity suggests founder effects in reported families. (zlotogora1994syndactylyectodermaldysplasia pages 2-3) Carrier frequency and population allele frequencies for specific PVRL1 pathogenic alleles were not available in the retrieved evidence.


10. Diagnostics

10.1 Clinical recognition

A practical clinical definition is based on co-occurrence of: 1) CL/P, 2) ectodermal abnormalities (hair/teeth/nails/sweating/skin), 3) syndactyly.

In the ED-spectrum framing, “A diagnosis of ED requires defects in two or more ectodermal derivatives…”. (ganske2021cleftlipand pages 1-2)

10.2 Differential diagnosis

Zlotogora (1994) highlights distinction from EEC syndrome, noting differences in inheritance and features; it suggests palmoplantar hyperkeratosis in older patients can help distinguish the disorders. (zlotogora1994syndactylyectodermaldysplasia pages 2-3)

10.3 Genetic testing strategy (real-world implementation)

Evidence-supported approach: * Sequence PVRL1 (NECTIN1) to confirm CLPED1 in suspected cases, especially in consanguineous families. (yoshida2015novelhomozygousmutation pages 1-3) * Yoshida et al. performed direct sequencing of PVRL1 and family testing; parents were heterozygous carriers. (yoshida2015novelhomozygousmutation pages 1-3)

10.4 Ancillary testing

In the molecularly confirmed Japanese case, the work-up included: * physiologic testing for hypohidrosis (sympathetic skin response) * microscopy/SEM for hair-shaft abnormalities * dermatologic evaluation and management for dermatitis. (yoshida2015novelhomozygousmutation pages 1-3)


11. Outcome / prognosis

Long-term prognosis is variable and not captured in prospective natural history studies in the retrieved corpus.

Observed outcomes include: * Survival into adulthood (clinical synthesis includes patients up to 65 years). (zlotogora1994syndactylyectodermaldysplasia pages 1-2) * Developmental disability can persist when present (classic family with affected brothers). (rodini1990autosomalrecessiveectodermal pages 1-3) * Neonatal/early childhood deaths reported in some pedigrees, with unclear attribution. (zlotogora1994syndactylyectodermaldysplasia pages 2-3)


12. Treatment

No disease-modifying molecular therapy exists in the retrieved evidence; management is supportive and surgical.

12.1 Surgical and interventional

  • Cleft lip/palate repair: historical clinical photos note repaired cleft lip; modern ED-CL/P care follows standard cleft protocols. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, ganske2021cleftlipand pages 2-4)
  • Syndactyly repair: surgical scars were described in a molecularly confirmed case, indicating real-world correction. (yoshida2015novelhomozygousmutation pages 1-3)

12.2 Supportive care

  • Dermatologic treatment for dermatitis/eczema from infancy was reported in a molecularly confirmed case. (yoshida2015novelhomozygousmutation pages 1-3)
  • ED-CL/P cohorts emphasize dental, otologic, ocular, and respiratory comorbidity management (though not specific to CLPED1 alone). (ganske2021cleftlipand pages 4-5, ganske2021cleftlipand pages 5-6)

12.3 Treatment outcomes and statistics (recent clinical data)

While not CLPED1-specific, ED-CL/P cohort outcomes provide real-world expectations for syndromic cleft care: * In an ED cohort, 3/9 (33%) older bilateral cases had velopharyngeal insufficiency; palatal fistula occurred (count reported). (ganske2021cleftlipand pages 2-4) * Patients may have perioperative respiratory complications requiring ICU monitoring. (ganske2021cleftlipand pages 5-6)

12.4 MAXO term suggestions

  • Cleft lip repair / cleft palate repair (MAXO: surgical repair of cleft lip/palate)
  • Syndactyly surgical correction
  • Genetic counseling
  • Dental rehabilitation (prosthodontic/orthodontic management for hypodontia)
  • Dermatologic therapy for eczema/keratoderma

12.5 Clinical trials

No CLPED1/Zlotogora–Ogur–specific therapeutic trials were identified; trials returned by broad searches primarily involved NECTIN4 oncology targets and are not relevant to treating CLPED1. (clinical-trials tool results; no relevant CLPED1 trials)


13. Prevention

Primary prevention is not applicable in the usual public-health sense for a monogenic Mendelian disorder. Prevention strategies are genetic: * Carrier testing and reproductive counseling in affected families (supported by AR inheritance and consanguinity patterns). (zlotogora1994syndactylyectodermaldysplasia pages 2-3) * Prenatal / preimplantation genetic testing is logically enabled when familial PVRL1 pathogenic variants are known (inference from established causality; family-based heterozygosity demonstrated). (suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3)


14. Other species / natural disease

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


15. Model organisms

Experimental systems show that disruption of the nectin–afadin axis can produce palatal fusion defects in mouse.

  • Development 2020 supplementary evidence shows that epithelial afadin loss via in utero lentiviral Cre is sufficient to cause cleft palate, while a later keratin promoter Cre approach was insufficient in that context (“Afdn knockout via lenti-Cre is suffient to cause CP, while K14-Cre is insufficient”). (lough2020disruptionofthe pages 1-3)
  • Dual knockdown of Nectin1 and Nectin4 produced delays in palatal shelf elevation and residual epithelial seam, and periderm abnormalities, supporting periderm/epithelium contributions to clefting. (lough2020disruptionofthe pages 3-5)

These models support a mechanistic bridge from PVRL1/NECTIN1 loss to impaired epithelial adhesion during palatogenesis.


Structured identifier summary (artifact)

Category Details Key reference(s)
Disease names / synonyms Zlotogora-Ogur syndrome; syndactyly, ectodermal dysplasia, and cleft lip/palate; cleft lip/palate-ectodermal dysplasia syndrome; CLPED1; Margarita Island ectodermal dysplasia / Margarita Island type. Later reviews state Zlotogora-Ogur syndrome and Margarita Island type are considered the same condition within CLPED1. (suzuki2000mutationsofpvrl1 pages 1-1, zlotogora1994syndactylyectodermaldysplasia pages 1-2, visinoni2009ectodermaldysplasiasclinical pages 2-3) Zlotogora 1994, J Med Genet 31:957-959, DOI: https://doi.org/10.1136/jmg.31.12.957; Suzuki et al. 2000, Nat Genet 25:427-430, DOI: https://doi.org/10.1038/78119
Key identifiers (OMIM) Historical OMIM usage in the literature is inconsistent. Primary molecular-era identifier for CLPED1 / Margarita Island type is OMIM 225060; reviews note the former Zlotogora-Ogur entry OMIM 225000 was reassigned to Rosselli-Gulienetti syndrome, while older papers variably cited 225000/22500 for the cleft-ED-syndactyly phenotype. (zlotogora1994syndactylyectodermaldysplasia pages 3-4, visinoni2009ectodermaldysplasiasclinical pages 2-3, ganske2021cleftlipand pages 1-2) Visinoni et al. 2009, Am J Med Genet A 149A:1980-2002, DOI: https://doi.org/10.1002/ajmg.a.32864; Ganske et al. 2021, Cleft Palate Craniofac J 58:237-243, DOI: https://doi.org/10.1177/1055665620949124
Inheritance Autosomal recessive; early case reports emphasized consanguinity in affected families and later molecular studies confirmed affected individuals were homozygous for pathogenic variants while parents were heterozygous carriers. (rodini1990autosomalrecessiveectodermal pages 3-4, zlotogora1994syndactylyectodermaldysplasia pages 2-3, suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3, visinoni2009ectodermaldysplasiasclinical pages 2-3) Rodini & Richieri-Costa 1990, Am J Med Genet 36:473-476, DOI: https://doi.org/10.1002/ajmg.1320360420
Causal gene PVRL1 (also known as NECTIN1), encoding nectin-1, a cell-cell adhesion molecule/herpesvirus receptor. Loss-of-function variants truncate nectin-1 and are reported to abolish afadin-associated adhesion functions relevant to craniofacial and ectodermal development. (suzuki2000mutationsofpvrl1 pages 1-1, suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3, ganske2021cleftlipand pages 1-2) Suzuki et al. 2000, Nat Genet 25:427-430, DOI: https://doi.org/10.1038/78119
Representative pathogenic variants Reported homozygous loss-of-function variants include Trp185Ter / W185X (TGG→TAG), frameshift at codon 185 (single-base deletion), frameshift at Gly323 (GGT→GGTT), and c.400C>T (p.Arg134*) in a Japanese patient. (suzuki2000mutationsofpvrl1 pages 1-3, yoshida2015novelhomozygousmutation pages 1-3, shu2015mutationanalysisof pages 3-7) Suzuki et al. 2000, DOI: https://doi.org/10.1038/78119; Yoshida et al. 2015, J Dermatol 42:715-719, DOI: https://doi.org/10.1111/1346-8138.12882
First clinical description / delineation Early delineation came from families reported by Zlotogora and Ogur and by Rodini & Richieri-Costa, with core findings of cleft lip/palate, ectodermal dysplasia, syndactyly, and variable intellectual disability/psychomotor delay. (zlotogora1994syndactylyectodermaldysplasia pages 1-2, rodini1990autosomalrecessiveectodermal pages 3-4, freihofer1997ectodermaldysplasiacleft pages 5-5) Rodini & Richieri-Costa 1990, Am J Med Genet 36:473-476, DOI: https://doi.org/10.1002/ajmg.1320360420; Zlotogora 1994 review, DOI: https://doi.org/10.1136/jmg.31.12.957
Gene discovery milestone Positional/molecular work showed that CLPED1, including Zlotogora-Ogur syndrome, is caused by PVRL1/NECTIN1 mutations. (suzuki2000mutationsofpvrl1 pages 1-1, suzuki2000mutationsofpvrl1 pages 1-3) Suzuki et al. 2000, Nat Genet 25:427-430, DOI: https://doi.org/10.1038/78119
Later case report / phenotype expansion A later Asian case confirmed homozygous c.400C>T (p.Arg134*) in PVRL1 and documented cleft lip/palate, hypohidrotic ectodermal dysplasia, cutaneous syndactyly, hypodontia, and hair-shaft abnormalities. (yoshida2015novelhomozygousmutation pages 1-3) Yoshida et al. 2015, J Dermatol 42:715-719, DOI: https://doi.org/10.1111/1346-8138.12882

Table: This table summarizes the main disease names, OMIM identifier history, inheritance, causal gene, and landmark references for Zlotogora-Ogur syndrome/CLPED1. It is useful for reconciling older clinical nomenclature with the later molecular definition based on PVRL1/NECTIN1.


Notes on evidence gaps (important for knowledge base curation)

  • MONDO/MeSH/ICD/Orphanet identifiers were not retrieved here and should be cross-mapped externally.
  • Syndrome-specific prevalence/incidence, carrier frequency, and variant population allele frequencies were not available in the retrieved full texts.
  • Standardized diagnostic criteria (beyond phenotype and genetic confirmation) and formal clinical guidelines specific to CLPED1 were not identified.

Key references (with publication dates and URLs)

  • Rodini & Richieri-Costa. Am J Med Genet. Aug 1990. https://doi.org/10.1002/ajmg.1320360420 (rodini1990autosomalrecessiveectodermal pages 1-3)
  • Zlotogora. J Med Genet. Dec 1994. https://doi.org/10.1136/jmg.31.12.957 (zlotogora1994syndactylyectodermaldysplasia pages 1-2)
  • Suzuki et al. Nat Genet. Aug 2000. https://doi.org/10.1038/78119 (suzuki2000mutationsofpvrl1 pages 1-3)
  • Visinoni et al. Am J Med Genet A. Sep 2009. https://doi.org/10.1002/ajmg.a.32864 (visinoni2009ectodermaldysplasiasclinical pages 2-3)
  • Yoshida et al. J Dermatol. Jul 2015. https://doi.org/10.1111/1346-8138.12882 (yoshida2015novelhomozygousmutation pages 1-3)
  • Ganske et al. Cleft Palate Craniofac J. Aug 2021. https://doi.org/10.1177/1055665620949124 (ganske2021cleftlipand pages 2-4)
  • Vachharajani et al. bioRxiv. Oct 2023. https://doi.org/10.1101/2023.09.24.559210 (vachharajani2023pdzdomainsfrom pages 1-3)
  • Awotoye et al. Cleft Palate Craniofac J. Nov 2024. https://doi.org/10.1177/10556656221135926 (awotoye2024damagingmutationsin pages 13-16)

References

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  2. (zlotogora1994syndactylyectodermaldysplasia pages 2-3): J. Zlotogora. Syndactyly, ectodermal dysplasia, and cleft lip/palate. Journal of Medical Genetics, 31:957-959, Dec 1994. URL: https://doi.org/10.1136/jmg.31.12.957, doi:10.1136/jmg.31.12.957. This article has 30 citations and is from a domain leading peer-reviewed journal.

  3. (suzuki2000mutationsofpvrl1 pages 1-3): Koji Suzuki, Diane Hu, Tania Bustos, Joel Zlotogora, Antonio Richieri-Costa, Jill A. Helms, and Richard A. Spritz. Mutations of pvrl1, encoding a cell-cell adhesion molecule/herpesvirus receptor, in cleft lip/palate-ectodermal dysplasia. Nature Genetics, 25:427-430, Aug 2000. URL: https://doi.org/10.1038/78119, doi:10.1038/78119. This article has 437 citations and is from a highest quality peer-reviewed journal.

  4. (yoshida2015novelhomozygousmutation pages 1-3): Kazue Yoshida, Ryota Hayashi, Hideki Fujita, Masaya Kubota, Mai Kondo, Yutaka Shimomura, and Hironori Niizeki. Novel homozygous mutation, c.400c>t (p.arg134*), in the pvrl1 gene underlies cleft lip/palate‐ectodermal dysplasia syndrome in an asian patient. The Journal of Dermatology, 42:715-719, Jul 2015. URL: https://doi.org/10.1111/1346-8138.12882, doi:10.1111/1346-8138.12882. This article has 18 citations.

  5. (zlotogora1994syndactylyectodermaldysplasia pages 1-2): J. Zlotogora. Syndactyly, ectodermal dysplasia, and cleft lip/palate. Journal of Medical Genetics, 31:957-959, Dec 1994. URL: https://doi.org/10.1136/jmg.31.12.957, doi:10.1136/jmg.31.12.957. This article has 30 citations and is from a domain leading peer-reviewed journal.

  6. (visinoni2009ectodermaldysplasiasclinical pages 2-3): Átila F. Visinoni, Toni Lisboa‐Costa, Nina A.B. Pagnan, and Eleidi A. Chautard‐Freire‐Maia. Ectodermal dysplasias: clinical and molecular review. American Journal of Medical Genetics Part A, 149A:1980-2002, Sep 2009. URL: https://doi.org/10.1002/ajmg.a.32864, doi:10.1002/ajmg.a.32864. This article has 244 citations.

  7. (ganske2021cleftlipand pages 1-2): Ingrid M. Ganske, Tim Irwin, Olivia Langa, Joseph Upton, Wen-Hann Tan, and John B. Mulliken. Cleft lip and palate in ectodermal dysplasia. The Cleft Palate-Craniofacial Journal, 58:237-243, Aug 2021. URL: https://doi.org/10.1177/1055665620949124, doi:10.1177/1055665620949124. This article has 11 citations.

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  9. (rodini1990autosomalrecessiveectodermal pages 3-4): Elaine S. O. Rodini and A. Richieri‐Costa. Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the zlotogora-ogur syndrome. American journal of medical genetics, 36 4:473-6, Aug 1990. URL: https://doi.org/10.1002/ajmg.1320360420, doi:10.1002/ajmg.1320360420. This article has 26 citations.

  10. (rodini1990autosomalrecessiveectodermal pages 1-3): Elaine S. O. Rodini and A. Richieri‐Costa. Autosomal recessive ectodermal dysplasia, cleft lip/palate, mental retardation, and syndactyly: the zlotogora-ogur syndrome. American journal of medical genetics, 36 4:473-6, Aug 1990. URL: https://doi.org/10.1002/ajmg.1320360420, doi:10.1002/ajmg.1320360420. This article has 26 citations.

  11. (lough2020disruptionofthe pages 1-3): Kendall J. Lough, Danielle C. Spitzer, Abby J. Bergman, Jessica J. Wu, Kevin M. Byrd, and Scott E. Williams. Disruption of the nectin-afadin complex recapitulates features of the human cleft lip/palate syndrome clped1. Development, Jan 2020. URL: https://doi.org/10.1242/dev.189241, doi:10.1242/dev.189241. This article has 26 citations and is from a domain leading peer-reviewed journal.

  12. (lough2020disruptionofthe pages 3-5): Kendall J. Lough, Danielle C. Spitzer, Abby J. Bergman, Jessica J. Wu, Kevin M. Byrd, and Scott E. Williams. Disruption of the nectin-afadin complex recapitulates features of the human cleft lip/palate syndrome clped1. Development, Jan 2020. URL: https://doi.org/10.1242/dev.189241, doi:10.1242/dev.189241. This article has 26 citations and is from a domain leading peer-reviewed journal.

  13. (awotoye2024damagingmutationsin pages 9-13): Waheed Awotoye, Peter A Mossey, Jacqueline B Hetmanski, Lord J J Gowans, Mekonen A Eshete, Wasiu L Adeyemo, Azeez Alade, Erliang Zeng, Olawale Adamson, Olutayo James, Azeez Fashina, Modupe O Ogunlewe, Thirona Naicker, Chinyere Adeleke, Tamara Busch, Mary Li, Aline Petrin, Abimbola Oladayo, Sami Kayali, Joy Olotu, Veronica Sule, Mohaned Hassan, John Pape, Emmanuel T Aladenika, Peter Donkor, Fareed K N Arthur, Solomon Obiri-Yeboah, Daniel K Sabbah, Pius Agbenorku, Debashree Ray, Gyikua Plange-Rhule, Alexander Acheampong Oti, Daniah Albokhari, Nara Sobreira, Martine Dunnwald, Terri H Beaty, Margaret Taub, Mary L Marazita, Adebowale A Adeyemo, Jeffrey C Murray, and Azeez Butali. Damaging mutations in afdn contribute to risk of nonsyndromic cleft lip with or without cleft palate. The Cleft Palate Craniofacial Journal, 61:697-705, Nov 2024. URL: https://doi.org/10.1177/10556656221135926, doi:10.1177/10556656221135926. This article has 6 citations.

  14. (vachharajani2023pdzdomainsfrom pages 1-3): Vipul T. Vachharajani, Matthew P. DeJong, Soumya Dutta, Jonathan Chapman, Eashani Ghosh, Abhishek Singharoy, and Alexander R. Dunn. Pdz domains from the junctional proteins afadin and zo-1 act as mechanosensors. bioRxiv, Oct 2023. URL: https://doi.org/10.1101/2023.09.24.559210, doi:10.1101/2023.09.24.559210. This article has 9 citations.

  15. (awotoye2024damagingmutationsin pages 13-16): Waheed Awotoye, Peter A Mossey, Jacqueline B Hetmanski, Lord J J Gowans, Mekonen A Eshete, Wasiu L Adeyemo, Azeez Alade, Erliang Zeng, Olawale Adamson, Olutayo James, Azeez Fashina, Modupe O Ogunlewe, Thirona Naicker, Chinyere Adeleke, Tamara Busch, Mary Li, Aline Petrin, Abimbola Oladayo, Sami Kayali, Joy Olotu, Veronica Sule, Mohaned Hassan, John Pape, Emmanuel T Aladenika, Peter Donkor, Fareed K N Arthur, Solomon Obiri-Yeboah, Daniel K Sabbah, Pius Agbenorku, Debashree Ray, Gyikua Plange-Rhule, Alexander Acheampong Oti, Daniah Albokhari, Nara Sobreira, Martine Dunnwald, Terri H Beaty, Margaret Taub, Mary L Marazita, Adebowale A Adeyemo, Jeffrey C Murray, and Azeez Butali. Damaging mutations in afdn contribute to risk of nonsyndromic cleft lip with or without cleft palate. The Cleft Palate Craniofacial Journal, 61:697-705, Nov 2024. URL: https://doi.org/10.1177/10556656221135926, doi:10.1177/10556656221135926. This article has 6 citations.

  16. (ganske2021cleftlipand pages 2-4): Ingrid M. Ganske, Tim Irwin, Olivia Langa, Joseph Upton, Wen-Hann Tan, and John B. Mulliken. Cleft lip and palate in ectodermal dysplasia. The Cleft Palate-Craniofacial Journal, 58:237-243, Aug 2021. URL: https://doi.org/10.1177/1055665620949124, doi:10.1177/1055665620949124. This article has 11 citations.

  17. (ganske2021cleftlipand pages 4-5): Ingrid M. Ganske, Tim Irwin, Olivia Langa, Joseph Upton, Wen-Hann Tan, and John B. Mulliken. Cleft lip and palate in ectodermal dysplasia. The Cleft Palate-Craniofacial Journal, 58:237-243, Aug 2021. URL: https://doi.org/10.1177/1055665620949124, doi:10.1177/1055665620949124. This article has 11 citations.

  18. (ganske2021cleftlipand pages 5-6): Ingrid M. Ganske, Tim Irwin, Olivia Langa, Joseph Upton, Wen-Hann Tan, and John B. Mulliken. Cleft lip and palate in ectodermal dysplasia. The Cleft Palate-Craniofacial Journal, 58:237-243, Aug 2021. URL: https://doi.org/10.1177/1055665620949124, doi:10.1177/1055665620949124. This article has 11 citations.

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