Usher syndrome type 2

disease
On this page

Also known as USH2

Summary

Usher syndrome type 2 (MONDO:0016484) is a disease caused by variants in ADGRV1 and USH2A, with 8 cohort genes and 6 clinical trials. The dominant Reactome pathway is Sensory processing of sound by outer hair cells of the cochlea (4 cohort genes). Top therapeutic interventions include ciliary neurotrophic factor and ultevursen.

At a glance

  • Prevalence: 1-9 / 100 000 (Denmark) [Orphanet-validated]
  • Causal genes: ADGRV1 (GenCC Definitive), USH2A (GenCC Definitive)
  • Cohort genes: 8
  • ClinVar variants: 112
  • Phenotypes (HPO): 21
  • Clinical trials: 6

Clinical features

Epidemiology

Prevalence records

2 prevalence record(s), Orphanet:

TypeClassValueGeographyValidation
Point prevalence1-9 / 100 0002.2DenmarkValidated
Point prevalence1-9 / 100 000EuropeNot yet validated

Signs & symptoms

Clinical features (HPO)

21 HPO clinical features (Orphanet curated; top 21 by frequency):

HPO IDTermFrequency
HP:0000359Abnormality of the inner earVery frequent (80-99%)
HP:0000407Sensorineural hearing impairmentVery frequent (80-99%)
HP:0000510Rod-cone dystrophyVery frequent (80-99%)
HP:0000512Abnormal electroretinogramVery frequent (80-99%)
HP:0000572Visual lossVery frequent (80-99%)
HP:0000575ScotomaVery frequent (80-99%)
HP:0007730Iris hypopigmentationVery frequent (80-99%)
HP:0000518CataractFrequent (30-79%)
HP:0000545MyopiaFrequent (30-79%)
HP:0000662NyctalopiaFrequent (30-79%)
HP:0001133Constriction of peripheral visual fieldFrequent (30-79%)
HP:0002360Sleep abnormalityFrequent (30-79%)
HP:0007663Reduced visual acuityFrequent (30-79%)
HP:0007994Peripheral visual field lossFrequent (30-79%)
HP:0012378FatigueFrequent (30-79%)
HP:0000551Color vision defectOccasional (5-29%)
HP:0000716DepressionOccasional (5-29%)
HP:0000739AnxietyOccasional (5-29%)
HP:0002141Gait imbalanceOccasional (5-29%)
HP:0032036Reduced contrast sensitivityOccasional (5-29%)
HP:0001751Abnormal vestibular functionVery rare (<1-4%)

Identifiers

Disease identifiers

FieldValue
Canonical nameUsher syndrome type 2
Mondo IDMONDO:0016484
Orphanet231178
DOIDDOID:0110827
ICD-1133632175
NCITC126328
SNOMED CT232058008
UMLSC0339534
MedGen83288
GARD0005440
Is cancer (heuristic)no

Also known as: USH2 · Usher syndrome type 2

Data availability: 112 ClinVar variants · 6 GenCC gene-disease records · 17 cell lines.

Disease family

An umbrella term covering 3 Mondo subtypes.

Classification path: disease › human disease › disease by body system or component › syndromic diseaseUsher syndromeUsher syndrome type 2

Related subtypes (4): Usher syndrome type 1, retinitis pigmentosa-deafness syndrome, Usher syndrome type 3, Usher syndrome, type 4

Subtypes (3): Usher syndrome type 2A, Usher syndrome type 2C, Usher syndrome type 2D

Genetics & variants

GWAS landscape

No GWAS associations recorded — common-variant (GWAS) studies don’t cover this disease (typical for Mendelian / rare diseases). See the curated gene cohort and Mendelian overlap below.

Variant details and genetic-evidence tiers

ClinVar germline variants

112 retrieved; paginated sample, class counts are floors:

47 pathogenic, 28 conflicting classifications of pathogenicity, 23 pathogenic/likely pathogenic, 10 uncertain significance, 4 likely pathogenic

ClinVarVariant (HGVS)GeneClassificationReview
46275NM_032119.4(ADGRV1):c.14973-2A>GADGRV1Pathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
695021NM_032119.4(ADGRV1):c.10458G>A (p.Trp3486Ter)ADGRV1Pathogeniccriteria provided, multiple submitters, no conflicts
695022NM_032119.4(ADGRV1):c.17974-1G>CADGRV1Pathogeniccriteria provided, multiple submitters, no conflicts
76051NM_032119.4(ADGRV1):c.9679C>T (p.Arg3227Ter)ADGRV1Pathogeniccriteria provided, multiple submitters, no conflicts
812215NM_032119.4(ADGRV1):c.12125del (p.Met4042fs)ADGRV1Pathogenicno assertion criteria provided
812216NM_032119.4(ADGRV1):c.15494del (p.Lys5165fs)ADGRV1Pathogenicno assertion criteria provided
813149NM_032119.4(ADGRV1):c.3195dup (p.Gly1066fs)ADGRV1Pathogeniccriteria provided, single submitter
813150NM_032119.4(ADGRV1):c.2241-2A>GADGRV1Pathogeniccriteria provided, single submitter
813030NM_022124.6(CDH23):c.9077+1G>ACDH23Pathogeniccriteria provided, multiple submitters, no conflicts
1352951NM_206933.4(USH2A):c.2779C>T (p.Gln927Ter)LOC122152296Pathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
143179NM_206933.4(USH2A):c.2802T>G (p.Cys934Trp)LOC122152296Pathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
374742NM_000260.4(MYO7A):c.137_138dup (p.Trp47fs)MYO7APathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
813193NM_000260.4(MYO7A):c.1853T>G (p.Leu618Arg)MYO7APathogeniccriteria provided, single submitter
813194NM_000260.4(MYO7A):c.1997G>C (p.Arg666Pro)MYO7APathogeniccriteria provided, single submitter
424972NM_153676.4(USH1C):c.841_848del (p.Ser281fs)USH1CPathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
813102NM_153676.4(USH1C):c.263del (p.Val88fs)USH1CPathogeniccriteria provided, multiple submitters, no conflicts
813103NM_153676.4(USH1C):c.580-2A>TUSH1CPathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
1069548NM_206933.4(USH2A):c.11235C>A (p.Tyr3745Ter)USH2APathogeniccriteria provided, multiple submitters, no conflicts
1377611NM_206933.4(USH2A):c.11516del (p.Gln3839fs)USH2APathogeniccriteria provided, single submitter
1415173NM_206933.4(USH2A):c.9602_9611del (p.Lys3201fs)USH2APathogeniccriteria provided, single submitter
1453731NM_206933.4(USH2A):c.13000C>T (p.Gln4334Ter)USH2APathogeniccriteria provided, multiple submitters, no conflicts
1455422NM_206933.4(USH2A):c.7168G>T (p.Gly2390Ter)USH2APathogeniccriteria provided, multiple submitters, no conflicts
1723456NM_206933.4(USH2A):c.1850G>A (p.Cys617Tyr)USH2APathogenicno assertion criteria provided
1723459NM_206933.4(USH2A):c.6638_6641del (p.Lys2213fs)USH2APathogenicno assertion criteria provided
1723460NM_206933.4(USH2A):c.9187A>T (p.Lys3063Ter)USH2APathogenicno assertion criteria provided
1723461NM_206933.4(USH2A):c.7809C>A (p.Cys2603Ter)USH2APathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
1723462NM_206933.4(USH2A):c.12313_12319del (p.Asp4105fs)USH2APathogeniccriteria provided, single submitter
1727006NM_206933.4(USH2A):c.1645-2A>GUSH2APathogeniccriteria provided, multiple submitters, no conflicts
1727007NM_206933.4(USH2A):c.9914_9915del (p.Glu3305fs)USH2APathogenic/Likely pathogeniccriteria provided, multiple submitters, no conflicts
1727205NM_206933.4(USH2A):c.1860C>A (p.Cys620Ter)USH2APathogenicno assertion criteria provided

Genes & proteins

Mendelian disease overlap and somatic drivers

GenCC: 42 · Orphanet: 18 · OMIM-shared: 0 · Dual-evidence (GWAS+Mendelian): 0

GenCC gene–disease validity (cohort genes)

the Disease column is the GenCC-asserted condition — a cohort gene’s strongest validity may be for a related predisposition syndrome.

GeneClassificationInheritanceDiseaseRecords
ADGRV1DefinitiveAutosomal recessiveUsher syndrome type 28
MYO7ADefinitiveAutosomal recessiveUsher syndrome type 115
USH2ADefinitiveUnknownUsher syndrome type 28
WHRNDefinitiveUnknownUsher syndrome type 2D11

Orphanet rare-disease linkage (cohort genes)

GeneOrphanet IDRare disease
USH2AOrphanet:231178Usher syndrome type 2
USH2AOrphanet:791Retinitis pigmentosa
ADGRV1Orphanet:231178Usher syndrome type 2
ADGRV1Orphanet:36387Genetic epilepsy with febrile seizure plus
MYO7AOrphanet:231169Usher syndrome type 1
MYO7AOrphanet:231178Usher syndrome type 2
MYO7AOrphanet:90635Rare autosomal dominant non-syndromic sensorineural deafness type DFNA
MYO7AOrphanet:90636Rare autosomal recessive non-syndromic sensorineural deafness type DFNB
WHRNOrphanet:231178Usher syndrome type 2
WHRNOrphanet:90636Rare autosomal recessive non-syndromic sensorineural deafness type DFNB
USH1COrphanet:231169Usher syndrome type 1
USH1COrphanet:90636Rare autosomal recessive non-syndromic sensorineural deafness type DFNB
CDH23Orphanet:231169Usher syndrome type 1
CDH23Orphanet:2965Prolactinoma
CDH23Orphanet:314777Familial isolated pituitary adenoma
CDH23Orphanet:90636Rare autosomal recessive non-syndromic sensorineural deafness type DFNB
CDH23Orphanet:91347TSH-secreting pituitary adenoma
CDH23Orphanet:96253Cushing disease

Cohort genes → proteins

8 cohort genes, 6 distinct canonical proteins.

Evidence partition

SubsetGenes
multi_evidence8

Cohort genes (full)

SymbolHGNCEnsemblUniProtNameEvidence
USH2AHGNC:12601ENSG00000042781O75445Usheringencc,clinvar
ADGRV1HGNC:17416ENSG00000164199Q8WXG9Adhesion G-protein coupled receptor V1gencc,clinvar
MYO7AHGNC:7606ENSG00000137474Q13402Unconventional myosin-VIIagencc,clinvar
WHRNHGNC:16361ENSG00000095397Q9P202Whirlingencc
USH1CHGNC:12597ENSG00000006611Q9Y6N9Harmoninclinvar
CDH23HGNC:13733ENSG00000107736Q9H251Cadherin-23clinvar
USH2A-AS2HGNC:40605ENSG00000233620USH2A antisense RNA 2clinvar
USH2A-AS1HGNC:40606ENSG00000236292USH2A antisense RNA 1clinvar

Cohort function summary

Lead sentence per gene, UniProt-curated.

SymbolProtein nameFunction (lead sentence)
USH2AUsherinInvolved in hearing and vision as member of the USH2 complex.
ADGRV1Adhesion G-protein coupled receptor V1G-protein coupled receptor which has an essential role in the development of hearing and vision.
MYO7AUnconventional myosin-VIIaMyosins are actin-based motor molecules with ATPase activity.
WHRNWhirlinInvolved in hearing and vision as member of the USH2 complex.
USH1CHarmoninAnchoring/scaffolding protein that is a part of the functional network formed by USH1C, USH1G, CDH23 and MYO7A that mediates mechanotransduction in cochlear hair cells.
CDH23Cadherin-23Cadherins are calcium-dependent cell adhesion proteins.

Protein-family classification

Druggable: 2 · Difficult: 3 · Unknown: 3 · Druggable fraction: 0.25

Family distribution

Cohort families vs a genome-wide background (hypergeometric, BH-FDR; fold = observed/expected). Counts kept; sorted by enrichment, so the catch-all Other/Unknown bucket no longer leads.

FamilyGenesFoldFDR
Scaffold/PPI36.5×0.035
Antibody/Immunoglobulin13.6×0.386
GPCR13.0×0.386
Other/Unknown30.7×0.919

Per-gene assignment

SymbolFamilyDruggable?ECInterPro (top 3)
USH2AAntibody/ImmunoglobulinyesLaminin_G, LE_dom, FN3_dom
ADGRV1GPCRyesGPCR_2_secretin-like, Calx_beta, EPTP
MYO7AScaffold/PPInoIQ_motif_EF-hand-BS, FERM_domain, MyTH4_dom
WHRNScaffold/PPInoPDZ, Whirlin_HN-like_dom2, PDZ_sf
USH1CScaffold/PPInoPDZ, Harmonin_N, PDZ_sf
CDH23Other/UnknownnoCadherin-like_dom, Cadherin-like_sf, Cadherin_CS
USH2A-AS2Other/Unknownno
USH2A-AS1Other/Unknownno

Expression context

Cohort genes with no expression data: 0.

6 cohort genes are a single-cell marker in ≥1 SCXA experiment.

Breadth distribution (Bgee present_calls)

BucketGenes
narrow (1-5 tissues)0
moderate (6-20)0
broad (>20)8
unknown0

Top tissues across cohort

TissueCohort genes
left adrenal gland3
right adrenal gland3
right adrenal gland cortex3
buccal mucosa cell1
male germ line stem cell (sensu Vertebrata) in testis1
right lobe of liver1
C1 segment of cervical spinal cord1
mucosa of transverse colon1
rectum1
left ovary1
right ovary1
ventricular zone1
anterior cingulate cortex1
cerebellar vermis1
quadriceps femoris1
bone marrow1
liver1
spinal cord1

Per-gene tissue summary (top 30)

SymbolBgee breadthFANTOM5 breadthSCXATop tissues
USH2A30tissue_specificmarkermale germ line stem cell (sensu Vertebrata) in testis, right lobe of liver, buccal mucosa cell
ADGRV1196broadmarkerright adrenal gland cortex, right adrenal gland, left adrenal gland
MYO7A186broadmarkerright adrenal gland cortex, right adrenal gland, left adrenal gland
WHRN226ubiquitousmarkerright adrenal gland cortex, left adrenal gland, right adrenal gland
USH1C203broadmarkermucosa of transverse colon, C1 segment of cervical spinal cord, rectum
CDH23161broadmarkerventricular zone, left ovary, right ovary
USH2A-AS254yesquadriceps femoris, anterior cingulate cortex, cerebellar vermis
USH2A-AS121yesliver, bone marrow, spinal cord

Protein interactions among cohort

Intra-cohort edges: 8.

Hub genes (top 10 by interactor count)

SymbolInteractor count
WHRN2,499
USH2A2,332
ADGRV11,658
CDH231,575
USH1C291
MYO7A43
USH2A-AS20
USH2A-AS10

Intra-cohort edges

ABSources
ADGRV1CDH23string_interaction
ADGRV1USH2Astring_interaction
ADGRV1WHRNstring_interaction
CDH23USH1Cbiogrid_interaction, intact
CDH23USH2Astring_interaction
CDH23WHRNstring_interaction
MYO7AUSH1Cbiogrid_interaction
USH2AWHRNstring_interaction

Structural data

PDB: 4 · AlphaFold-only: 2 · No structure: 2

Cohort genes with PDB structures (top 30)

SymbolUniProtPDB entries
USH1CQ9Y6N911
CDH23Q9H2516
WHRNQ9P2025
MYO7AQ134021

AlphaFold-only cohort genes (top 30 by pLDDT)

SymbolUniProtpLDDT
USH2AO75445
ADGRV1Q8WXG9

Function

Pathway analysis

Distinct Reactome pathways touched by cohort: 9. Enrichment computed across 8 evidence-associated genes (5 with Reactome annotation).

Pathways by enrichment

Over-representation of cohort genes vs the genome-wide background (hypergeometric test, Benjamini-Hochberg FDR; fold = observed/expected over 5 annotated cohort genes). Counts and members are kept as ground-truth; sorted by enrichment.

PathwayCohort genesFoldFDRSample cohort genes
Sensory processing of sound by outer hair cells of the cochlea4163.1×2e-08MYO7A, USH1C, CDH23, WHRN
Sensory processing of sound by inner hair cells of the cochlea4130.5×3e-08MYO7A, USH1C, CDH23, WHRN
Sensory processing of sound2123.5×3e-04MYO7A, CDH23
Sensory Perception238.1×0.002MYO7A, CDH23
The canonical retinoid cycle in rods (twilight vision)1103.8×0.017MYO7A
EGR2 and SOX10-mediated initiation of Schwann cell myelination173.7×0.020ADGRV1
Visual phototransduction151.9×0.025MYO7A
Nervous system development18.6×0.125ADGRV1
Developmental Biology12.9×0.301ADGRV1

GO biological processes by enrichment

Over-representation of cohort genes vs the genome-wide background (hypergeometric test, Benjamini-Hochberg FDR; fold = observed/expected over 6 annotated cohort genes). Counts and members are kept as ground-truth; sorted by enrichment.

GO termCohort genesFoldFDRSample cohort genes
sensory perception of light stimulus61872.4×2e-19USH2A, ADGRV1, MYO7A, USH1C, CDH23, WHRN
sensory perception of sound6100.9×3e-11USH2A, ADGRV1, MYO7A, USH1C, CDH23, WHRN
inner ear receptor cell differentiation31685.2×5e-09USH2A, ADGRV1, WHRN
equilibrioception31203.7×1e-08MYO7A, USH1C, CDH23
photoreceptor cell maintenance4239.0×1e-08USH2A, ADGRV1, USH1C, CDH23
auditory receptor cell stereocilium organization3421.3×2e-07MYO7A, CDH23, WHRN
inner ear receptor cell stereocilium organization3421.3×2e-07ADGRV1, USH1C, WHRN
establishment of protein localization3216.1×2e-06USH2A, ADGRV1, WHRN
visual perception453.0×2e-06USH2A, ADGRV1, MYO7A, CDH23
maintenance of animal organ identity21123.5×6e-06USH2A, ADGRV1
inner ear auditory receptor cell differentiation2401.2×5e-05USH2A, USH1C
detection of mechanical stimulus involved in sensory perception of sound2312.1×8e-05ADGRV1, WHRN
cochlea development2156.0×3e-04MYO7A, CDH23
pigment granule transport12808.7×0.001MYO7A
establishment of localization in cell253.5×0.002USH2A, WHRN
cerebellar Purkinje cell layer formation11404.3×0.002WHRN
protein localization to microvillus11404.3×0.002USH1C
paranodal junction maintenance11404.3×0.002WHRN
parallel actin filament bundle assembly1936.2×0.003USH1C
auditory receptor cell morphogenesis1702.2×0.004USH1C
phagolysosome assembly1561.7×0.005MYO7A
mechanoreceptor differentiation1561.7×0.005MYO7A
regulation of microvillus length1401.2×0.006USH1C
brush border assembly1401.2×0.006USH1C
hair cell differentiation1351.1×0.007USH2A
self proteolysis1255.3×0.009ADGRV1
retinal cone cell development1234.1×0.009USH1C
nervous system process1200.6×0.010ADGRV1
retina homeostasis1187.2×0.010WHRN
obsolete cell-cell adhesion via plasma-membrane adhesion molecules1187.2×0.010CDH23

Therapeutics

Drug target analysis

Approved (phase 4): 0 · Phase ≥3: 0 · Phased (≥1): 0 · Undrugged: 8

Druggability breadth: 0 of 8 evidence-associated genes (0%) have a ChEMBL target (buckets above are over the deeply-mined display cohort).

Top cohort targets by molecule count

SymbolMoleculesMax phase
USH2A00
ADGRV100
MYO7A00
WHRN00
USH1C00
CDH2300
USH2A-AS200
USH2A-AS100

Bioactivity and enzyme data

Enzyme cohort genes (≥1 EC): 0.

Pharmacogenomics

Cohort genes with a PharmGKB record: 6; with CPIC/DPWG dosing guidelines: 0.

No cohort gene has a CPIC/DPWG genotype-guided dosing guideline (PharmGKB).

Chemical tractability of cohort targets

0 approved/phased compounds have measured bioactivity against a cohort gene (and aren’t yet in disease-level trials). This is a research / tractability signal, NOT a therapeutic recommendation — a bioactivity row often reflects off-target or screening binding (e.g. promiscuous kinase inhibitors against a cohort kinase), implying no disease mechanism.

Druggability pyramid

Cohort genes binned by druggability tier (high → low):

TierDefinitionGenesSymbols
AApproved (phase 4 drug)0
BPhased (≥1) drug, not yet approved0
CDruggable family + PDB, no drug0
DDruggable family + AlphaFold only, no drug2USH2A, ADGRV1
EDifficult family or no structure, no drug6MYO7A, WHRN, USH1C, CDH23, USH2A-AS2, USH2A-AS1

Undrugged target profiles

8 cohort genes are undrugged. Ranked by ‘starting-point quality’ (assay depth + drugged-partner adjacency).

SymbolChEMBL assaysDrugged partners (top 3)
USH2A0
ADGRV10
MYO7A0
WHRN0
USH1C0
CDH230
USH2A-AS20
USH2A-AS10

Clinical trials & evidence

Clinical trials

Clinical trials: 6.

Phase distribution (across all retrieved trials)

PhaseTrials
PHASE23
PHASE2/PHASE32
PHASE1/PHASE21

Top trials by phase / activity

NCTPhaseStatusTitle
NCT05158296PHASE2/PHASE3TERMINATEDStudy to Evaluate the Efficacy Safety and Tolerability of Ultevursen in Subjects With RP Due to Mutations in Exon 13 of the USH2A Gene (Sirius)
NCT05176717PHASE2/PHASE3TERMINATEDStudy to Evaluate the Efficacy Safety and Tolerability of QR-421a in Subjects With RP Due to Mutations in Exon 13 of the USH2A Gene With Early to Moderate Vision Loss (Celeste)
NCT06627179PHASE2RECRUITINGStudy to Evaluate Ultevursen in Subjects With Retinitis Pigmentosa (RP) Due to Mutations in Exon 13 of the USH2A Gene
NCT01530659PHASE2COMPLETEDRetinal Imaging in CNTF -Releasing Encapsulated Cell Implant Treated Patients for Early-stage Retinitis Pigmentosa
NCT03780257PHASE1/PHASE2COMPLETEDStudy to Evaluate Safety and Tolerability of QR-421a in Subjects With RP Due to Mutations in Exon 13 of the USH2A Gene
NCT05085964PHASE2TERMINATEDAn Open-Label Extension Study to Evaluate Safety & Tolerability of QR-421a in Subjects With Retinitis Pigmentosa

Drugs tested across these trials (top 30)

MoleculeMax phaseTrials referencing
CILIARY NEUROTROPHIC FACTOR31
ULTEVURSEN21