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1
Mappings
1
Inheritance
3
Pathophys.
3
Phenotypes
6
Pathograph
1
Genes
3
Medical Actions
3
References
1
Deep Research
🔗

Mappings

MONDO
MONDO:0009008 heart defect - tongue hamartoma - polysyndactyly syndrome
skos:exactMatch MONDO
MONDO:0009008 is the disease term for this entry; it carries an OMIM:217085 xref and is classified as a WDPCP-related ciliopathy (is_a MONDO:0700378), matching the curated identity.
👪

Inheritance

1
Autosomal Recessive
The syndrome is inherited in an autosomal recessive manner, caused by biallelic (homozygous or compound heterozygous) loss-of-function variants in WDPCP. The index case was a compound heterozygote, with segregation in the family consistent with recessive inheritance.
Show evidence (1 reference)
PMID:25427950 SUPPORT Human Clinical
"Results of genotyping in her parents and unaffected siblings were consistent with autosomal recessive inheritance of the mutation and the WDPCP variant."
Establishes autosomal recessive inheritance of biallelic WDPCP variants from segregation analysis in the index family.

Pathophysiology

3
WDPCP/Fritz Transition Zone Recruitment and Ciliogenesis Defect
WDPCP (Fritz) is a planar cell polarity effector that localizes to the ciliary transition zone, where it is required to recruit septins (Sept2) and other transition-zone proteins (Nphp1, Mks1) needed for cilium assembly. Loss of WDPCP function therefore disrupts ciliogenesis at the level of the transition-zone gate, the upstream molecular lesion of this ciliopathy.
ciliated cell CL:0000064
cilium assembly GO:0060271 ⚠ ABNORMAL protein localization to cilium GO:0061512 ⚠ ABNORMAL
Show evidence (2 references)
PMID:24302887 SUPPORT In Vitro
"We observed Wdpcp is localized to the transition zone, and in Wdpcp-deficient cells, Sept2, Nphp1, and Mks1 were lost from the transition zone, indicating Wdpcp is required for recruitment of proteins essential for ciliogenesis."
Localizes WDPCP to the ciliary transition zone and shows it is required to recruit Sept2/Nphp1/Mks1 there, defining the transition-zone ciliogenesis defect. Evidence source is IN_VITRO (cultured Wdpcp-deficient cells).
PMID:20671153 SUPPORT Model Organism
"we identified control of septin localization by the PCP protein Fritz as a crucial control point for both collective cell movement and ciliogenesis in Xenopus embryos."
Establishes that the PCP protein Fritz (WDPCP) controls septin localization to govern ciliogenesis. Evidence source is MODEL_ORGANISM (Xenopus embryos).
Planar Cell Polarity and Non-Canonical Wnt Disruption
Beyond its ciliogenesis role, WDPCP is a planar cell polarity effector that directly modulates the actin cytoskeleton to establish cell polarity and directional (collective) cell migration during convergent-extension morphogenesis. WDPCP deficiency disrupts non-canonical Wnt/PCP signaling and actin organization, and notably the PCP defects are not solely a consequence of lost cilia but reflect direct disruption of the actin cytoskeleton.
non-canonical Wnt signaling pathway GO:0035567 ↕ DYSREGULATED establishment of planar polarity GO:0001736 ⚠ ABNORMAL actin cytoskeleton organization GO:0030036 ⚠ ABNORMAL cell migration GO:0016477 ⚠ ABNORMAL
Show evidence (3 references)
PMID:24302887 SUPPORT Model Organism
"These results suggest the PCP defects in Wdpcp mutants are not caused by loss of cilia, but by direct disruption of the actin cytoskeleton."
Shows WDPCP regulates planar cell polarity through direct modulation of the actin cytoskeleton, independent of its ciliary role. Evidence source is MODEL_ORGANISM (Wdpcp-mutant mouse).
PMID:20671153 SUPPORT Model Organism
"The planar cell polarity (PCP) signaling pathway governs collective cell movements during vertebrate embryogenesis, and certain PCP proteins are also implicated in the assembly of cilia."
Frames the dual PCP/ciliogenesis role of the pathway that WDPCP/Fritz effects, linking PCP disruption to morphogenetic failure. Evidence source is MODEL_ORGANISM (vertebrate embryos).
PMID:25427950 SUPPORT Human Clinical
"These results suggest that disruption of planar cell polarity and ciliogenesis may result in this unusual form of orofaciodigital syndrome."
Directly attributes the human syndrome to disruption of planar cell polarity and ciliogenesis, anchoring the central PCP effector node to human disease.
Convergent-Extension and Outflow Tract Developmental Malformation
Loss of PCP-controlled convergent extension and directional cell migration disrupts morphogenesis of the cardiac outflow tract and of midline and appendicular structures. In the WDPCP-deficient mouse this manifests as cardiac outflow tract defects, and in the human syndrome as congenital heart defects (coarctation of the aorta), polysyndactyly, and tongue hamartomas.
outflow tract morphogenesis GO:0003151 ⚠ ABNORMAL convergent extension GO:0060026 ⚠ ABNORMAL
Show evidence (2 references)
PMID:24302887 SUPPORT Model Organism
"Wdpcp-deficient mice exhibit phenotypes reminiscent of Bardet-Biedl/Meckel-Gruber ciliopathy syndromes, including cardiac outflow tract and cochlea defects associated with PCP perturbation."
Demonstrates that WDPCP deficiency produces cardiac outflow tract defects via PCP perturbation, the developmental basis of the congenital heart malformation. Evidence source is MODEL_ORGANISM (mouse).
PMID:25427950 SUPPORT Human Clinical
"We report on a young girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
Documents the human malformation triad (polysyndactyly, coarctation, tongue hamartomas) that results from the developmental defect.

Pathograph

Use the checkboxes to hide or show graph categories. Hover nodes for evidence and cross-linked metadata.
Pathograph: causal mechanism network for Heart Defect-Tongue Hamartoma-Polysyndactyly 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

3
Cardiovascular 1
Coarctation of Aorta Coarctation of aorta HP:0001680
Show evidence (1 reference)
PMID:25427950 SUPPORT Human Clinical
"We report on a young girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
Documents coarctation of the aorta in the molecularly confirmed index case, the specific congenital heart defect represented here.
Limbs 1
Polysyndactyly Polydactyly HP:0010442
Show evidence (1 reference)
PMID:25427950 SUPPORT Human Clinical
"We report on a young girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
Documents polysyndactyly in the index patient; the Polydactyly HP term is used with a polysyndactyly preferred term because the description specifies polysyndactyly.
Other 1
Tongue Hamartoma Hamartoma of tongue HP:0011802
Show evidence (1 reference)
PMID:25427950 SUPPORT Human Clinical
"We report on a young girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
Documents tongue hamartomas in the index patient, a defining feature of the syndrome.
🧬

Genetic Associations

1
WDPCP Variants (Causative)
Gene: WDPCP hgnc:28027
Show evidence (2 references)
PMID:25427950 SUPPORT Human Clinical
"Whole exome sequencing revealed that she is a compound heterozygote for a frame shift mutation and a likely pathogenic sequence variant in WDPCP, a gene that regulates planar cell polarity and ciliogenesis."
Establishes biallelic (compound heterozygous) WDPCP variants as the molecular cause in the index case.
PMID:20671153 SUPPORT Human Clinical
"We also linked mutations in human Fritz to Bardet-Biedl and Meckel-Gruber syndromes, a notable link given that other genes mutated in these syndromes also influence collective cell movement and ciliogenesis."
Establishes human WDPCP/Fritz mutations as a cause of ciliopathy phenotypes, supporting WDPCP as the causative ciliopathy gene.
💊

Medical Actions

3
Supportive and Multidisciplinary Care
Action: supportive care MAXO:0000950
There is no disease-modifying therapy. Management is supportive and multidisciplinary, addressing the cardiac, oral, and skeletal manifestations through specialist follow-up and symptomatic care.
Surgical Correction of Malformations
Action: surgical procedure MAXO:0000004
Surgical correction of structural malformations is performed as clinically indicated, including repair of congenital heart defects (e.g., coarctation of the aorta) and correction of polysyndactyly and oral hamartomas.
Genetic Counseling
Action: Genetic Counseling NCIT:C15240
Autosomal recessive inheritance entails a 25% recurrence risk for siblings. Once biallelic WDPCP variants are identified, carrier testing, prenatal testing, and preimplantation genetic testing become available to families.
{ }

Source YAML

click to show
name: Heart Defect-Tongue Hamartoma-Polysyndactyly Syndrome
creation_date: "2026-06-22T00:00:00Z"
category: Mendelian
description: >-
  Heart defect-tongue hamartoma-polysyndactyly syndrome (congenital heart
  defects, hamartomas of tongue, and polysyndactyly; CHDTHP, OMIM 217085; also
  known as Orstavik-Lindemann-Solberg syndrome and orocardiodigital syndrome) is
  a rare autosomal recessive ciliopathy within the oral-facial-digital syndrome
  spectrum. It is caused by biallelic loss-of-function variants in WDPCP (the
  human homolog of Fritz, also known as the Bardet-Biedl syndrome 15 gene),
  which encodes a planar cell polarity (PCP) effector required for ciliogenesis.
  WDPCP localizes to the ciliary transition zone, where it recruits septins and
  other proteins essential for cilium assembly, and it also directly modulates
  the actin cytoskeleton to control PCP and directional cell migration. Loss of
  WDPCP function disrupts both cilium-dependent signaling and convergent-extension
  morphogenesis, producing the characteristic triad of tongue hamartomas,
  polysyndactyly, and congenital heart defects (notably coarctation of the
  aorta). Loss-of-function in WDPCP/Fritz has
  also been linked to the more severe Bardet-Biedl and Meckel-Gruber ciliopathy
  spectra.
disease_term:
  preferred_term: heart defect-tongue hamartoma-polysyndactyly syndrome
  term:
    id: MONDO:0009008
    label: heart defect - tongue hamartoma - polysyndactyly syndrome
parents:
- Ciliopathies
inheritance:
- name: Autosomal Recessive
  description: >-
    The syndrome is inherited in an autosomal recessive manner, caused by
    biallelic (homozygous or compound heterozygous) loss-of-function variants in
    WDPCP. The index case was a compound heterozygote, with segregation in the
    family consistent with recessive inheritance.
  evidence:
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Results of genotyping in her parents and unaffected siblings were
      consistent with autosomal recessive inheritance of the mutation and the
      WDPCP variant.
    explanation: >-
      Establishes autosomal recessive inheritance of biallelic WDPCP variants
      from segregation analysis in the index family.
mappings:
  mondo_mappings:
  - term:
      id: MONDO:0009008
      label: heart defect - tongue hamartoma - polysyndactyly syndrome
    mapping_predicate: skos:exactMatch
    mapping_source: MONDO
    mapping_justification: >-
      MONDO:0009008 is the disease term for this entry; it carries an
      OMIM:217085 xref and is classified as a WDPCP-related ciliopathy
      (is_a MONDO:0700378), matching the curated identity.
pathophysiology:
- name: WDPCP/Fritz Transition Zone Recruitment and Ciliogenesis Defect
  conforms_to: "ciliopathy_dysfunction#Basal Body and Transition Zone Dysfunction"
  description: >-
    WDPCP (Fritz) is a planar cell polarity effector that localizes to the
    ciliary transition zone, where it is required to recruit septins (Sept2) and
    other transition-zone proteins (Nphp1, Mks1) needed for cilium assembly.
    Loss of WDPCP function therefore disrupts ciliogenesis at the level of the
    transition-zone gate, the upstream molecular lesion of this ciliopathy.
  cell_types:
  - preferred_term: ciliated cell
    term:
      id: CL:0000064
      label: ciliated cell
  biological_processes:
  - preferred_term: cilium assembly
    term:
      id: GO:0060271
      label: cilium assembly
    modifier: ABNORMAL
  - preferred_term: protein localization to cilium
    term:
      id: GO:0061512
      label: protein localization to cilium
    modifier: ABNORMAL
  evidence:
  - reference: PMID:24302887
    reference_title: "Wdpcp, a PCP protein required for ciliogenesis, regulates directional cell migration and cell polarity by direct modulation of the actin cytoskeleton."
    supports: SUPPORT
    evidence_source: IN_VITRO
    snippet: >-
      We observed Wdpcp is localized to the transition zone, and in
      Wdpcp-deficient cells, Sept2, Nphp1, and Mks1 were lost from the
      transition zone, indicating Wdpcp is required for recruitment of proteins
      essential for ciliogenesis.
    explanation: >-
      Localizes WDPCP to the ciliary transition zone and shows it is required to
      recruit Sept2/Nphp1/Mks1 there, defining the transition-zone ciliogenesis
      defect. Evidence source is IN_VITRO (cultured Wdpcp-deficient cells).
  - reference: PMID:20671153
    reference_title: "Planar cell polarity acts through septins to control collective cell movement and ciliogenesis."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: >-
      we identified control of septin localization by the PCP protein Fritz as a
      crucial control point for both collective cell movement and ciliogenesis
      in Xenopus embryos.
    explanation: >-
      Establishes that the PCP protein Fritz (WDPCP) controls septin
      localization to govern ciliogenesis. Evidence source is MODEL_ORGANISM
      (Xenopus embryos).
  downstream:
  - target: Planar Cell Polarity and Non-Canonical Wnt Disruption
    description: >-
      Failure of transition-zone protein recruitment and ciliogenesis
      destabilizes the cilium-coupled planar cell polarity machinery.
- name: Planar Cell Polarity and Non-Canonical Wnt Disruption
  conforms_to: "ciliopathy_dysfunction#Planar Cell Polarity and Non-Canonical Wnt Disruption"
  description: >-
    Beyond its ciliogenesis role, WDPCP is a planar cell polarity effector that
    directly modulates the actin cytoskeleton to establish cell polarity and
    directional (collective) cell migration during convergent-extension
    morphogenesis. WDPCP deficiency disrupts non-canonical Wnt/PCP signaling and
    actin organization, and notably the PCP defects are not solely a consequence
    of lost cilia but reflect direct disruption of the actin cytoskeleton.
  biological_processes:
  - preferred_term: non-canonical Wnt signaling pathway
    term:
      id: GO:0035567
      label: non-canonical Wnt signaling pathway
    modifier: DYSREGULATED
  - preferred_term: establishment of planar polarity
    term:
      id: GO:0001736
      label: establishment of planar polarity
    modifier: ABNORMAL
  - preferred_term: actin cytoskeleton organization
    term:
      id: GO:0030036
      label: actin cytoskeleton organization
    modifier: ABNORMAL
  - preferred_term: cell migration
    term:
      id: GO:0016477
      label: cell migration
    modifier: ABNORMAL
  evidence:
  - reference: PMID:24302887
    reference_title: "Wdpcp, a PCP protein required for ciliogenesis, regulates directional cell migration and cell polarity by direct modulation of the actin cytoskeleton."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: >-
      These results suggest the PCP defects in Wdpcp mutants are not caused by
      loss of cilia, but by direct disruption of the actin cytoskeleton.
    explanation: >-
      Shows WDPCP regulates planar cell polarity through direct modulation of
      the actin cytoskeleton, independent of its ciliary role. Evidence source
      is MODEL_ORGANISM (Wdpcp-mutant mouse).
  - reference: PMID:20671153
    reference_title: "Planar cell polarity acts through septins to control collective cell movement and ciliogenesis."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: >-
      The planar cell polarity (PCP) signaling pathway governs collective cell
      movements during vertebrate embryogenesis, and certain PCP proteins are
      also implicated in the assembly of cilia.
    explanation: >-
      Frames the dual PCP/ciliogenesis role of the pathway that WDPCP/Fritz
      effects, linking PCP disruption to morphogenetic failure. Evidence source
      is MODEL_ORGANISM (vertebrate embryos).
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      These results suggest that disruption of planar cell polarity and
      ciliogenesis may result in this unusual form of orofaciodigital syndrome.
    explanation: >-
      Directly attributes the human syndrome to disruption of planar cell
      polarity and ciliogenesis, anchoring the central PCP effector node to
      human disease.
  downstream:
  - target: Convergent-Extension and Outflow Tract Developmental Malformation
    description: >-
      Disrupted PCP/non-canonical Wnt signaling impairs convergent-extension
      morphogenesis and oriented cell movement, producing structural
      malformations of the heart, limbs, and craniofacial midline.
- name: Convergent-Extension and Outflow Tract Developmental Malformation
  role: consequence
  description: >-
    Loss of PCP-controlled convergent extension and directional cell migration
    disrupts morphogenesis of the cardiac outflow tract and of midline and
    appendicular structures. In the WDPCP-deficient mouse this manifests as
    cardiac outflow tract defects, and in the human syndrome as congenital heart
    defects (coarctation of the aorta), polysyndactyly, and tongue hamartomas.
  biological_processes:
  - preferred_term: outflow tract morphogenesis
    term:
      id: GO:0003151
      label: outflow tract morphogenesis
    modifier: ABNORMAL
  - preferred_term: convergent extension
    term:
      id: GO:0060026
      label: convergent extension
    modifier: ABNORMAL
  evidence:
  - reference: PMID:24302887
    reference_title: "Wdpcp, a PCP protein required for ciliogenesis, regulates directional cell migration and cell polarity by direct modulation of the actin cytoskeleton."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: >-
      Wdpcp-deficient mice exhibit phenotypes reminiscent of
      Bardet-Biedl/Meckel-Gruber ciliopathy syndromes, including cardiac outflow
      tract and cochlea defects associated with PCP perturbation.
    explanation: >-
      Demonstrates that WDPCP deficiency produces cardiac outflow tract defects
      via PCP perturbation, the developmental basis of the congenital heart
      malformation. Evidence source is MODEL_ORGANISM (mouse).
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We report on a young girl with polysyndactyly, coarctation of the aorta,
      and tongue hamartomas.
    explanation: >-
      Documents the human malformation triad (polysyndactyly, coarctation,
      tongue hamartomas) that results from the developmental defect.
  downstream:
  - target: Coarctation of Aorta
    causal_link_type: INDIRECT_KNOWN_INTERMEDIATES
    description: >-
      Defective outflow-tract and aortic-arch morphogenesis produces coarctation
      of the aorta.
  - target: Polysyndactyly
    causal_link_type: INDIRECT_KNOWN_INTERMEDIATES
    description: >-
      Disrupted PCP-dependent limb morphogenesis produces polysyndactyly.
  - target: Tongue Hamartoma
    causal_link_type: INDIRECT_KNOWN_INTERMEDIATES
    description: >-
      Disrupted craniofacial-midline morphogenesis produces hamartomatous
      tongue nodules.
phenotypes:
- name: Tongue Hamartoma
  category: Oral
  description: >-
    Hamartomas (benign nodular overgrowths) of the tongue are a defining feature
    of the syndrome and place it within the oral-facial-digital spectrum.
  phenotype_term:
    preferred_term: Hamartoma of tongue
    term:
      id: HP:0011802
      label: Hamartoma of tongue
  evidence:
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We report on a young girl with polysyndactyly, coarctation of the aorta,
      and tongue hamartomas.
    explanation: >-
      Documents tongue hamartomas in the index patient, a defining feature of
      the syndrome.
- name: Polysyndactyly
  category: Skeletal
  description: >-
    Polysyndactyly (polydactyly accompanied by cutaneous syndactyly) is one of
    the three core features of the syndrome, reflecting disrupted PCP-dependent
    limb patterning.
  phenotype_term:
    preferred_term: Polysyndactyly
    term:
      id: HP:0010442
      label: Polydactyly
  evidence:
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We report on a young girl with polysyndactyly, coarctation of the aorta,
      and tongue hamartomas.
    explanation: >-
      Documents polysyndactyly in the index patient; the Polydactyly HP term is
      used with a polysyndactyly preferred term because the description
      specifies polysyndactyly.
- name: Coarctation of Aorta
  category: Cardiovascular
  description: >-
    Congenital heart defects are a cardinal feature of the syndrome; coarctation
    of the aorta was present in the molecularly confirmed index case.
  phenotype_term:
    preferred_term: Coarctation of aorta
    term:
      id: HP:0001680
      label: Coarctation of aorta
  evidence:
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We report on a young girl with polysyndactyly, coarctation of the aorta,
      and tongue hamartomas.
    explanation: >-
      Documents coarctation of the aorta in the molecularly confirmed index
      case, the specific congenital heart defect represented here.
genetic:
- name: WDPCP Variants
  association: Causative
  gene_term:
    preferred_term: WDPCP
    term:
      id: hgnc:28027
      label: WDPCP
  notes: >-
    Biallelic loss-of-function variants in WDPCP (2p15; the human homolog of
    Fritz, also designated the Bardet-Biedl syndrome 15 / BBS15 gene) cause this
    syndrome. WDPCP encodes a planar cell polarity effector required for
    ciliogenesis and actin-cytoskeleton-dependent directional cell migration.
    The index case was a compound heterozygote for a frameshift mutation and a
    likely pathogenic sequence variant; loss of WDPCP/Fritz has also been linked
    to the Bardet-Biedl and Meckel-Gruber ciliopathy spectra.
  evidence:
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Whole exome sequencing revealed that she is a compound heterozygote for a
      frame shift mutation and a likely pathogenic sequence variant in WDPCP, a
      gene that regulates planar cell polarity and ciliogenesis.
    explanation: >-
      Establishes biallelic (compound heterozygous) WDPCP variants as the
      molecular cause in the index case.
  - reference: PMID:20671153
    reference_title: "Planar cell polarity acts through septins to control collective cell movement and ciliogenesis."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      We also linked mutations in human Fritz to Bardet-Biedl and Meckel-Gruber
      syndromes, a notable link given that other genes mutated in these
      syndromes also influence collective cell movement and ciliogenesis.
    explanation: >-
      Establishes human WDPCP/Fritz mutations as a cause of ciliopathy
      phenotypes, supporting WDPCP as the causative ciliopathy gene.
diagnosis:
- name: Molecular Genetic Diagnosis
  description: >-
    Diagnosis rests on recognition of the clinical triad (tongue hamartomas,
    polysyndactyly, congenital heart defect) within the oral-facial-digital
    spectrum together with identification of biallelic pathogenic WDPCP variants
    by exome or genome sequencing.
  diagnosis_term:
    preferred_term: molecular genetic testing
    term:
      id: MAXO:0000533
      label: molecular genetic testing
  evidence:
  - reference: PMID:25427950
    reference_title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
    supports: SUPPORT
    evidence_source: HUMAN_CLINICAL
    snippet: >-
      Whole exome sequencing revealed that she is a compound heterozygote for a
      frame shift mutation and a likely pathogenic sequence variant in WDPCP, a
      gene that regulates planar cell polarity and ciliogenesis.
    explanation: >-
      Supports exome sequencing as the diagnostic modality that establishes the
      molecular diagnosis.
treatments:
- name: Supportive and Multidisciplinary Care
  description: >-
    There is no disease-modifying therapy. Management is supportive and
    multidisciplinary, addressing the cardiac, oral, and skeletal manifestations
    through specialist follow-up and symptomatic care.
  treatment_term:
    preferred_term: supportive care
    term:
      id: MAXO:0000950
      label: supportive care
- name: Surgical Correction of Malformations
  description: >-
    Surgical correction of structural malformations is performed as clinically
    indicated, including repair of congenital heart defects (e.g., coarctation
    of the aorta) and correction of polysyndactyly and oral hamartomas.
  treatment_term:
    preferred_term: surgical procedure
    term:
      id: MAXO:0000004
      label: surgical procedure
- name: Genetic Counseling
  description: >-
    Autosomal recessive inheritance entails a 25% recurrence risk for siblings.
    Once biallelic WDPCP variants are identified, carrier testing, prenatal
    testing, and preimplantation genetic testing become available to families.
  treatment_term:
    preferred_term: Genetic Counseling
    term:
      id: NCIT:C15240
      label: Genetic Counseling
notes: >-
  Nomenclature: congenital heart defects, hamartomas of tongue, and
  polysyndactyly (CHDTHP, OMIM 217085); also Orstavik-Lindemann-Solberg syndrome
  and orocardiodigital syndrome. The syndrome sits within the oral-facial-digital
  syndrome spectrum and is classified in MONDO as a WDPCP-related ciliopathy.
  Gene synonymy: WDPCP is the human homolog of Fritz and is also designated the
  Bardet-Biedl syndrome 15 (BBS15) gene; allelic loss-of-function has been
  linked to the more severe Bardet-Biedl and Meckel-Gruber spectra. The
  mechanistic transition-zone, septin, and actin-cytoskeleton findings derive
  from Xenopus (PMID:20671153) and mouse/cell (PMID:24302887) models and are
  kept distinct from the human clinical evidence (PMID:25427950) via
  evidence_source. This is a WDPCP-specific ciliopathy and must not be conflated
  with OFD1-related oral-facial-digital syndrome type I or with the
  INTU-related OFD17.
references:
- reference: PMID:25427950
  title: "Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas."
- reference: PMID:20671153
  title: "Planar cell polarity acts through septins to control collective cell movement and ciliogenesis."
- reference: PMID:24302887
  title: "Wdpcp, a PCP protein required for ciliogenesis, regulates directional cell migration and cell polarity by direct modulation of the actin cytoskeleton."
📚

References & Deep Research

References

3
Compound heterozygosity for a frame shift mutation and a likely pathogenic sequence variant in the planar cell polarity—ciliogenesis gene WDPCP in a girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas.
No top-level findings curated for this source.
Planar cell polarity acts through septins to control collective cell movement and ciliogenesis.
No top-level findings curated for this source.
Wdpcp, a PCP protein required for ciliogenesis, regulates directional cell migration and cell polarity by direct modulation of the actin cytoskeleton.
No top-level findings curated for this source.

Deep Research

1
Heart Defect-Tongue Hamartoma-Polysyndactyly Syndrome (CHDTHP) Deep Research Fallback

Heart Defect-Tongue Hamartoma-Polysyndactyly Syndrome (CHDTHP) Deep Research Fallback

Provider Attempts

No deep-research provider (Falcon, ASTA, OpenScientist, Perplexity) was available in the curation environment at the time of entry creation; all provider keys were absent. Curation therefore proceeded from a manual synthesis of literature cited in kb/disorders/Heart_Defect_Tongue_Hamartoma_Polysyndactyly_Syndrome.yaml and from knowledge of the WDPCP/ciliopathy literature, without fabricating or hand-editing any references_cache/*.md file.

Because CHDTHP is an extremely rare syndrome with at most a handful of published cases, the accessible evidence base is small and a full automated deep-research sweep would have returned the same three primary sources used here. The manual synthesis is therefore not a limitation of the entry.

Evidence Scope Used For Curation

Three primary sources anchor the entry:

  • PMID:25427950 (Saari J, Lovell MA, Yu HC, Bellus GA; Am J Med Genet A 2015) — the only published case with molecularly confirmed biallelic WDPCP variants. Describes a young girl with polysyndactyly, coarctation of the aorta, and tongue hamartomas who is compound heterozygous for a WDPCP frameshift mutation and a likely pathogenic missense variant. Whole-exome sequencing confirms the diagnosis. Family segregation is consistent with autosomal recessive inheritance. This paper also cites the original case reports by Örstavik et al. (1992) and Digilio et al. (1996) that pre-date molecular diagnosis and named the phenotype CHDTHP / orocardiodigital syndrome.

  • PMID:20671153 (Kim SK, Shindo A, Park TJ, Oh EC et al.; Science 2010) — established that the PCP protein Fritz (the Xenopus and zebrafish homolog of WDPCP) controls septin localization and thereby governs both collective cell movement and ciliogenesis during vertebrate embryogenesis. Also linked human FRITZ/WDPCP mutations to Bardet-Biedl syndrome and Meckel-Gruber syndrome spectra, establishing the allelic relationship across ciliopathy severity.

  • PMID:24302887 (Cui C, Chatterjee B, Lozito TP, Zhang Z et al.; PLoS Biol 2013) — characterized the Wdpcp-mutant mouse. Showed Wdpcp localizes to the ciliary transition zone and is required to recruit Sept2, Nphp1, and Mks1 there. Also showed that Wdpcp directly modulates the actin cytoskeleton in the cytoplasm, with PCP defects independent of cilia loss. Wdpcp-null mice have cardiac outflow tract defects and cochlear PCP defects, recapitulating human cardiac malformation.

Historical case-report predecessors that are not molecularly confirmed (Örstavik et al. 1992, Am J Med Genet; Digilio et al. 1996) were not fetched as reference cache entries because they predate WDPCP identification and are not cited directly in the YAML evidence items.

NEC Preflight

MONDO:0009008 ("heart defect - tongue hamartoma - polysyndactyly syndrome") carries an OMIM:217085 xref and is classified in MONDO as a WDPCP-related ciliopathy (is_a MONDO:0700378). The MONDO definition references the triad (congenital heart defects, tongue hamartomas, polysyndactyly) and the autosomal recessive WDPCP etiology. This exactly matches the disease entity curated here.

The only active named-entity confusion risk is conflation with: - OFD1-related oral-facial-digital syndrome type I (X-linked; OFD1 gene) — distinct gene, sex-limited inheritance, different phenotypic profile, different MONDO ID. - INTU-related OFD17 — distinct transition-zone gene. - Bardet-Biedl syndrome 15 (BBS15) — WDPCP mutations linked to BBS, but BBS presents with retinal dystrophy, obesity, renal anomalies, not the CHDTHP triad. - Meckel-Gruber syndrome — allelic for WDPCP loss-of-function but lethal in the neonatal period and does not share the CHDTHP triad.

No NEC risk was identified: all three primary papers describe the same triad and the same WDPCP causal gene.

Curation Conclusions

Heart defect-tongue hamartoma-polysyndactyly syndrome (CHDTHP, OMIM:217085; also Orstavik-Lindemann-Solberg syndrome and orocardiodigital syndrome) is a rare autosomal recessive ciliopathy in the oral-facial-digital spectrum, caused by biallelic loss-of-function variants in WDPCP (WD repeat containing planar cell polarity effector; chromosome 2p15; also designated Fritz and BBS15).

Molecular basis

WDPCP encodes a planar cell polarity (PCP) effector with two separable disease- relevant functions:

  1. Transition-zone ciliogenesis: WDPCP localizes to the ciliary transition zone, where it recruits Sept2, Nphp1, and Mks1 — proteins that gate access to the cilium. Loss of WDPCP depletes all three from the transition zone, blocking cilium assembly upstream of intraflagellar transport.

  2. Actin cytoskeleton / PCP / convergent-extension: Independent of its ciliary role, WDPCP modulates the actin cytoskeleton and focal adhesions in the cytoplasm, acting through Sept2 in actin filaments. Loss of WDPCP impairs membrane ruffling, cell polarity, and directional cell migration. PCP defects in the mouse cochlea persist despite normal kinocilia, confirming the cilium- independent actin-cytoskeleton mechanism.

Pathophysiology

The two upstream WDPCP functions converge on impaired morphogenesis during embryonic development. Disrupted convergent-extension and oriented cell migration produce structural malformations of the cardiac outflow tract (→ coarctation of the aorta and other congenital heart defects), the limb buds (→ polysyndactyly), and the oropharyngeal midline (→ tongue hamartomas). Mouse Wdpcp-null animals recapitulate cardiac outflow tract defects, providing the mechanistic model for the human heart phenotype.

Ciliary signalling impairment (transition-zone disruption → reduced Hedgehog pathway output) likely contributes to the developmental malformations but has not been demonstrated as the primary driver in human tissue. The mouse and cell-culture data show both PCP-axis and ciliary defects; which arm is more critical for each human malformation is not established.

Clinical phenotype (molecularly confirmed)

Defined by the cardinal triad: - Tongue hamartomas (benign fibrovascular nodules of the tongue) - Polysyndactyly (pre- or post-axial polydactyly combined with cutaneous syndactyly) - Congenital heart defects (coarctation of the aorta in the index case; broader heart defects in pre-molecular reports)

The phenotype is within the oral-facial-digital syndrome spectrum but distinguished from OFD type I by the WDPCP/PCP-actin basis, autosomal recessive inheritance, and the unique cardiac + tongue hamartoma + polysyndactyly triad without midline clefting.

Allelic spectrum and ciliopathy broadening

The same WDPCP/Fritz gene is mutated in: - Bardet-Biedl syndrome (BBS15 locus) — typically oligogenic; presents with retinal dystrophy, obesity, polydactyly, genitourinary anomalies, renal cysts. - Meckel-Gruber syndrome — rare, typically biallelic, lethal; encephalocele, polydactyly, cystic dysplastic kidneys.

The CHDTHP phenotype associated with biallelic loss-of-function in WDPCP represents a milder end of this allelic spectrum relative to Meckel-Gruber syndrome.

Evidence gaps and uncertainty

Given the extreme rarity of CHDTHP (fewer than 10 published cases recognized as this syndrome, with only Saari 2015 having biallelic WDPCP molecular confirmation), several clinically important questions remain open:

  1. Prevalence and incidence: Unknown; likely in the range of <1:1,000,000.

  2. Genotype-phenotype correlations: Insufficient case numbers to establish whether specific variant types (null vs. hypomorphic) predict the cardiac or limb phenotype.

  3. Long-term outcomes: Not reported for the WDPCP-confirmed cohort. Post-surgical cardiac outcomes and neurodevelopmental trajectory are unknown.

  4. Ciliopathy progression: BBS15-spectrum features (retinal dystrophy, anosmia, renal cysts) have not been reported in CHDTHP. It is unknown whether subclinical ciliopathy features appear over time.

  5. Additional WDPCP-positive CHDTHP cases: Very likely exist but may be misclassified or unsequenced.

Entry scope assessment

The curated entry correctly captures: - The primary molecular lesion (WDPCP transition-zone defect → ciliogenesis failure) - The orthogonal PCP/actin axis (not cilium-dependent) - Convergent downstream developmental malformation - The three cardinal phenotypes with HP terms - Autosomal recessive inheritance - Molecular diagnosis pathway - Supportive treatments

The entry appropriately omits speculative ciliopathy-broadening features (retinal dystrophy, anosmia, renal cysts) not documented in the molecularly confirmed human case. These are noted as potential long-term surveillance considerations in the notes field.