0
Mappings
0
Definitions
2
Inheritance
4
Pathophysiology
0
Histopathology
13
Phenotypes
7
Pathograph
1
Genes
4
Treatments
4
Subtypes
0
Differentials
0
Datasets
0
Trials
0
Models
1
Literature
👪

Inheritance

2
Autosomal dominant HP:0000006
BVMD, ADVIRC, MRCS, and BEST1-associated RP are autosomal dominant with incomplete penetrance and variable expressivity.
Autosomal dominant
Autosomal recessive HP:0000007
ARB is autosomal recessive, caused by biallelic BEST1 loss-of-function mutations.
Autosomal recessive

Subtypes

4
Best Vitelliform Macular Dystrophy (BVMD) MONDO:0007931
Most common bestrophinopathy. Autosomal dominant with incomplete penetrance and variable expression. Typically presents in childhood with a central macular vitelliform (egg-yolk) lesion that progresses through six stages: previtelliform, vitelliform, vitelliruptive, pseudohypopion, atrophic, and cicatricial. Visual acuity is initially preserved but declines in later stages. Full-field ERG is normal; EOG shows reduced Arden ratio (less than 1.5). Mild hyperopia is common.
Show evidence (1 reference)
PMID:34015078 SUPPORT
"The VMD phenotype consists of a prominent raised central macular lesion that undergoes morphological changes classified into six stages: previtelliform, vitelliform, vitelliruptive, pseudohypopion, atrophic, and cicatricial."
Describes the six classical stages of BVMD macular lesion progression.
Autosomal Recessive Bestrophinopathy (ARB) MONDO:0012733
Caused by biallelic (homozygous or compound heterozygous) BEST1 mutations resulting in absent functional bestrophin-1. Presents with central visual loss in the first two decades. Features include macular changes resembling BVMD vitelliruptive/atrophic stages, extramacular punctate deposits, subretinal and intraretinal fluid, hyperopia, short axial length, severely reduced EOG Arden ratio (1.0 or less), and reduced full-field ERG. Angle-closure glaucoma and amblyopia may co-occur.
Show evidence (2 references)
PMID:30578502 SUPPORT
"Autosomal recessive bestrophinopathy (ARB) results from a total absence of functional bestrophin-1 protein owing to two BEST1 mutations, one on each of the chromosomes."
Confirms ARB results from biallelic BEST1 mutations causing total absence of functional protein.
PMID:34015078 SUPPORT
"ARB displays macular changes resembling the vitelliruptive, atrophic, and cicatricial stages of VMD. The phenotype additionally encompasses extramacular punctate deposits, intraretinal and subretinal fluid (SRF) accumulation, punctate or diffuse fundus hyperautofluorescence, hyperopia, short..."
Comprehensive description of ARB phenotype distinguishing it from BVMD.
Microcornea, Rod-Cone Dystrophy, Cataract, and Posterior Staphyloma (MRCS) MONDO:0033644
Rare autosomal dominant condition with anterior segment involvement. Features include microcornea, rod-cone dystrophy, early-onset cataract, and posterior staphyloma. Represents the most complex bestrophinopathy phenotype extending beyond pure macular disease.
BEST1-Associated Retinitis Pigmentosa MONDO:0019200
Rare autosomal dominant form presenting as classical retinitis pigmentosa with rod-cone dystrophy, nyctalopia, peripheral visual field loss, and attenuated retinal vessels. Caused by specific BEST1 mutations that produce a rod-cone dystrophy phenotype rather than typical macular lesions.

Pathophysiology

4
BEST1 Channel Dysfunction
Pathogenic variants in BEST1 disrupt the calcium-activated chloride channel function of bestrophin-1. The channel normally forms a stable homopentamer in the RPE basolateral membrane, mediating transepithelial ion transport, regulation of intracellular calcium signaling, and RPE cell volume. Dominant mutations cause a dominant-negative effect while recessive mutations result in loss of function.
Retinal Pigment Epithelial Cell link
BEST1 link
Chloride Transport link ↓ DECREASED
calcium-activated chloride channel activity link
Show evidence (2 references)
PMID:34612806 SUPPORT
"Bestrophins are a family of calcium-activated chloride channels (CaCCs) with relevance to human physiology and a myriad of eye diseases termed "bestrophinopathies"."
Confirms bestrophins are CaCCs and their dysfunction causes bestrophinopathies.
PMID:29507198 SUPPORT
"BEST1 acts as a multifunctional channel protein responsible for mediating transepithelial ion transport, regulation of intracellular calcium signaling and RPE cell volume, and modulation of the homeostatic milieu in the subretinal space"
Describes the multifunctional role of BEST1 in RPE physiology.
RPE-Photoreceptor Interface Disruption
BEST1 dysfunction leads to loss of the native extracellular compartmentalization of photoreceptor outer segments. RPE apical microvillar ensheathment of cone outer segments is lost, and the insoluble interphotoreceptor matrix is compromised. This results in retina-wide microdetachments between RPE and photoreceptors that are modulated by light exposure.
Retinal Pigment Epithelial Cell link
Show evidence (2 references)
PMID:29507198 SUPPORT
"Mutations in the BEST1 gene cause detachment of the retina and degeneration of photoreceptor (PR) cells due to a primary channelopathy in the neighboring retinal pigment epithelium (RPE) cells."
Directly states that BEST1 mutations cause retinal detachment and PR degeneration from RPE channelopathy.
PMID:29507198 SUPPORT Model Organism
"In vivo imaging demonstrated a retina-wide RPE-PR microdetachment, which contracted with dark adaptation and expanded upon exposure to a moderate intensity of light."
Canine model demonstrates retina-wide microdetachments modulated by light.
Subretinal Fluid Accumulation and Vitelliform Lesions
Impaired RPE fluid transport and disrupted photoreceptor outer segment phagocytosis lead to subretinal fluid accumulation and deposits of lipofuscin and unphagocytosed outer segment material. These form the characteristic vitelliform (egg-yolk) lesions. In BVMD, lesions are typically central macular; in ARB, they are more extensive with extramacular involvement.
Retinal Pigment Epithelial Cell link
Show evidence (1 reference)
PMID:30578502 SUPPORT
"The yellowish lesions are larger and more extensive-extending beyond the arcades-than in the typical autosomal dominant Best disease."
Describes extent of vitelliform lesions in ARB versus BVMD.
Progressive Macular and Retinal Degeneration
Chronic disruption of the RPE-photoreceptor interface leads to progressive RPE atrophy, photoreceptor degeneration, and macular atrophy. In BVMD this predominantly affects the macula; in ARB the degeneration is more widespread with panretinal involvement. Late stages may include subretinal fibrosis and choroidal neovascularization.
Show evidence (2 references)
PMID:34015078 SUPPORT
"This study suggests that arVMD is part of a continuum of autosomal recessive and dominant BEST1-related retinopathies."
Confirms that AD and AR forms represent a disease continuum of progressive retinal degeneration.
PMID:30578502 SUPPORT
"As panretinal photoreceptor dysfunction progresses with advancing age, full-field (FF) ERG shows delayed rod and cone responses."
Documents progressive photoreceptor dysfunction over time in bestrophinopathy.

Pathograph

Use the checkboxes to hide or show graph categories. Hover nodes for evidence and cross-linked metadata.
Pathograph: causal mechanism network for BEST1 Bestrophinopathies 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
Vitelliform Macular Lesion VERY_FREQUENT Ophthalmological HP:0030500
Show evidence (1 reference)
PMID:34015078 SUPPORT
"The VMD phenotype consists of a prominent raised central macular lesion that undergoes morphological changes classified into six stages: previtelliform, vitelliform, vitelliruptive, pseudohypopion, atrophic, and cicatricial."
Describes the hallmark vitelliform macular lesion and its staging.
Reduced Visual Acuity VERY_FREQUENT Ophthalmological HP:0007663
Show evidence (1 reference)
PMID:34015078 SUPPORT
"The best corrected visual acuity (BCVA) is mildly decreased to 20/50 on average (range 20/20 to 20/200), until later stages, where natural progression and complication create a steep decline."
Documents visual acuity decline particularly in later disease stages.
Abnormal Electrooculogram VERY_FREQUENT Ophthalmological HP:0030453
Show evidence (1 reference)
PMID:34015078 SUPPORT
"electrophysiology changes show a moderately decreased electro-oculography (EOG) Arden ratio of less than 1.5 with frequently normal full-field electroretinogram (ffERG)."
Documents the characteristic EOG abnormality in BVMD with normal ERG.
Macular Dystrophy VERY_FREQUENT Ophthalmological HP:0007754
Macular Atrophy FREQUENT Ophthalmological HP:0007401
Hypermetropia FREQUENT Ophthalmological HP:0000540
Show evidence (1 reference)
PMID:34015078 SUPPORT
"The phenotype additionally encompasses extramacular punctate deposits, intraretinal and subretinal fluid (SRF) accumulation, punctate or diffuse fundus hyperautofluorescence, hyperopia, short axial-length"
Hyperopia is listed as part of the ARB phenotype.
Retinal Detachment OCCASIONAL Ophthalmological HP:0000541
Show evidence (1 reference)
PMID:29507198 SUPPORT
"Mutations in the BEST1 gene cause detachment of the retina and degeneration of photoreceptor (PR) cells due to a primary channelopathy in the neighboring retinal pigment epithelium (RPE) cells."
Retinal detachment is a direct consequence of BEST1 mutations.
Microcornea VERY_RARE Ophthalmological HP:0000482
Rod-Cone Dystrophy OCCASIONAL Ophthalmological HP:0000510
Cataract VERY_RARE Ophthalmological HP:0000518
Nyctalopia OCCASIONAL Ophthalmological HP:0000662
RPE Atrophy FREQUENT Ophthalmological HP:0007722
Show evidence (1 reference)
PMID:30578502 SUPPORT
"decreased AF reflects RPE atrophy."
RPE atrophy is documented as a feature on fundus autofluorescence imaging.
Angle-Closure Glaucoma OCCASIONAL Ophthalmological HP:0000501
Show evidence (1 reference)
PMID:30578502 SUPPORT
"Refractive error is hyperopia, predisposing these eyes for acute angle-closure glaucoma."
Hyperopia in ARB predisposes to angle-closure glaucoma.
🧬

Genetic Associations

1
BEST1 (Causative)
Show evidence (2 references)
PMID:34015078 SUPPORT
"mutations in the BEST1 protein lead to a collection of retinopathies: Best vitelliform macular dystrophy (VMD) (OMIM-153700), autosomal dominant vitreoretinochoroidopathy (ADVIRC) and microcornea, rod-cone dystrophy, cataract, and posterior staphyloma syndrome (MRCS) (OMIM-193220), retinitis..."
Enumerates the full spectrum of BEST1-related retinopathies.
PMID:29507198 SUPPORT
"The most common IRD due to a primary RPE defect is caused by mutations in BEST1"
Confirms BEST1 mutations as the most common cause of primary RPE-mediated inherited retinal dystrophy.
💊

Treatments

4
Anti-VEGF Therapy
Action: anti-VEGF pharmacotherapy Ontology label: pharmacotherapy MAXO:0000058
Intravitreal anti-VEGF injections for choroidal neovascularization complicating late-stage BVMD or ARB.
Low Vision Aids and Rehabilitation
Action: supportive care MAXO:0000950
Visual rehabilitation and low vision aids for patients with progressive central vision loss.
Genetic Counseling
Action: genetic counseling MAXO:0000079
Recommended for all affected families. Important to distinguish AD versus AR inheritance for recurrence risk counseling.
Gene Therapy (Investigational)
Action: gene therapy MAXO:0001001
Subretinal AAV2-mediated BEST1 gene augmentation therapy has shown reversal of retinal detachments and correction of RPE-photoreceptor interface abnormalities in canine models. Phase 1/2 clinical trials (OPGx-BEST1/BIRD-1) are underway for BVMD and ARB.
Show evidence (2 references)
PMID:29507198 SUPPORT Model Organism
"Subretinal BEST1 gene augmentation therapy using adeno-associated virus 2 reversed not only clinically detectable subretinal lesions but also the diffuse microdetachments."
Canine BEST1 gene therapy reverses both macroscopic and microscopic retinal detachments.
PMID:29507198 SUPPORT Model Organism
"Human translation of canine BEST1 gene therapy success in reversal of macro- and microdetachments through restoration of cytoarchitecture at the RPE-PR interface has promise to result in improved visual function and prevent disease progression in patients affected with bestrophinopathies."
Authors state translational promise of canine gene therapy results for human bestrophinopathies.
📚

Literature Summaries

1
Falcon
1. Disease Information
Edison Scientific Literature 47 citations 2026-04-04T12:54:36.533958

1. Disease Information

1.1 What is the disease?

BEST1 bestrophinopathies are a group of autosomal dominant and autosomal recessive inherited retinal diseases (IRDs) caused by pathogenic variants in BEST1, most prominently manifesting as Best vitelliform macular dystrophy (BVMD; “Best disease”) and autosomal recessive bestrophinopathy (ARB), but also including ADVIRC, adult-onset vitelliform phenotypes, and BEST1‑associated retinitis pigmentosa. These conditions share a central theme of retinal pigment epithelium (RPE) dysfunction with characteristic subretinal material (vitelliform deposits and/or fluid) and frequent electro‑oculogram (EOG) abnormalities. (bianco2024multimodalimagingin pages 1-2, amato2023genetherapyin pages 2-3)

Concise overview (current understanding): BEST1 dysfunction perturbs RPE ion/fluid homeostasis and calcium‑regulated physiology; clinically this produces vitelliform lesions, subretinal/intraretinal fluid, abnormal EOG light rise, and progressive macular/retinal degeneration with variable severity and inheritance. (amato2023genetherapyin pages 1-2, khan2018normalelectrooculographyin pages 9-13)

1.2 Key identifiers (as available in evidence)

The retrieved evidence explicitly provides the following MIM/OMIM identifiers: - BVMD / Best disease: MIM #153700 (bianco2024multimodalimagingin pages 1-2) - BEST1 gene: MIM #607854 (bianco2024multimodalimagingin pages 1-2) - Autosomal recessive bestrophinopathy (ARB): OMIM 611809 (zhao2024clinicalandgenetic pages 1-2) - ADVIRC: MIM #193220 (bianco2024multimodalimagingin pages 1-2) - BEST1-associated retinitis pigmentosa: MIM #613194 (bianco2024multimodalimagingin pages 1-2) - Adult-onset vitelliform macular degeneration: OMIM 608161 (zhao2024clinicalandgenetic pages 1-2)

MONDO / Orphanet / ICD‑10/ICD‑11 / MeSH: Not available in the retrieved text evidence set; therefore, specific IDs cannot be asserted here without adding new database retrieval. (No relevant evidence found in provided corpus)

1.3 Synonyms and alternative names

  • BVMD: “Best disease”, “Best vitelliform macular dystrophy” (beryozkin2024bestdiseaseglobal pages 1-2)
  • AOFVD/AVMD: “adult‑onset foveomacular vitelliform dystrophy”, “adult vitelliform macular dystrophy/degeneration” (amato2023genetherapyin pages 2-3, zhao2024clinicalandgenetic pages 1-2)
  • ARB: “autosomal recessive bestrophinopathy” (zhao2024clinicalandgenetic pages 1-2)
  • BEST1 has historical alias VMD2 in some literature (khan2018normalelectrooculographyin pages 9-13)

1.4 Evidence source type

Information summarized here is derived from: - Aggregated disease-level resources in the form of cohort studies and reviews (e.g., imaging review, prevalence analysis) (bianco2024multimodalimagingin pages 1-2, beryozkin2024bestdiseaseglobal pages 1-2) - Primary human cohort/case series studies (e.g., ARB cohorts in China; BVMD/ARB clinical series) (zhao2024clinicalandgenetic pages 1-2, shi2023comprehensivegeneticanalysis pages 5-8) - Preclinical animal and in vitro models (canine models; iPSC‑RPE) (amato2023genetherapyin pages 6-7, khan2018normalelectrooculographyin pages 9-13)


2. Etiology

2.1 Disease causal factors

Primary cause: Germline pathogenic variants in BEST1. The BEST1 gene encodes bestrophin‑1, a homopentameric Ca2+-activated anion (chloride) channel expressed in RPE, and BEST1 pathogenic variants cause a phenotypic spectrum collectively termed “bestrophinopathies.” (amato2023genetherapyin pages 1-2, amato2023genetherapyin pages 2-3)

2.2 Risk factors

Genetic risk factors

  • Causal variants: Numerous pathogenic variants across BEST1 (missense predominating overall; truncating variants enriched in ARB), including coding variants (e.g., p.Arg255Trp, p.Ala195Val) and noncoding deep intronic variants affecting splicing (e.g., c.867+97G>A). (shi2023comprehensivegeneticanalysis pages 1-2, zhao2024clinicalandgenetic pages 1-2)
  • Founder effects: In a large Chinese ARB cohort, deep intronic variant c.867+97G>A was identified as a founder variant accounting for ~16% of alleles/heritability in that cohort. (shi2023comprehensivegeneticanalysis pages 2-2, shi2023comprehensivegeneticanalysis pages 5-8)

Environmental/lifestyle risk factors

The retrieved evidence does not provide robust epidemiologic environmental risk factors (e.g., smoking/diet/exposures). The conditions are primarily genetic with variable expressivity; modifiers are suspected but not quantified here. (khan2018normalelectrooculographyin pages 9-13)

2.3 Protective factors

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

2.4 Gene–environment interactions

The retrieved evidence supports the concept that phenotype is variable and may involve modifiers, but does not provide a specific, validated gene–environment interaction. (khan2018normalelectrooculographyin pages 9-13)


3. Phenotypes

3.1 Major phenotype domains (with suggested HPO terms)

Below are common clinical phenotypes across the BEST1 spectrum. HPO term suggestions are provided as likely mappings.

  1. Vitelliform subretinal lesions / deposits (fundus “egg‑yolk” lesion; multifocal yellow deposits)
  2. Evidence: classic BVMD “egg‑yolk” lesion; ARB multifocal deposits throughout posterior pole/peripapillary region. (beryozkin2024bestdiseaseglobal pages 1-2, zhao2024clinicalandgenetic pages 1-2)
  3. Suggested HPO: Vitelliform macular dystrophy (HP:0007757); Macular lesion (HP:0001103); Retinal flecks (HP:0001086)

  4. Subretinal fluid and intraretinal cystic/schitic spaces (especially ARB)

  5. Evidence: ARB OCT findings include subretinal fluid and intraretinal cystic/schitic spaces; changes may fluctuate longitudinally. (shakeel2024phenotypeandgenetic pages 2-3, cideciyan2023photoreceptorfunctionand pages 6-8)
  6. Suggested HPO: Subretinal fluid (HP:0031889); Cystoid macular edema (HP:0000605); Retinoschisis (HP:0000579)

  7. Abnormal electro‑oculogram (EOG) Arden ratio / reduced light peak

  8. Evidence: EOG abnormality is a hallmark in BVMD/ARB; however normal EOG can occur in a minority (e.g., Arden ratio >1.65 in 8% in one large series). (amato2023genetherapyin pages 2-3)
  9. Suggested HPO: Abnormal electrooculogram (HP:0025206) (term may vary by HPO release)

  10. Visual acuity impairment / central vision loss

  11. Evidence: BVMD can progress from normal fundus to lesion disruption and atrophy with visual decline; ARB can range broadly in acuity. (beryozkin2024bestdiseaseglobal pages 1-2, zhao2024clinicalandgenetic pages 1-2)
  12. Suggested HPO: Reduced visual acuity (HP:0007663); Central scotoma (HP:0000603)

  13. Macular neovascularization / choroidal neovascularization (CNV/CNVM)

  14. Evidence: OCTA detects CNVs in many BVMD eyes; nonexudative CNVs are often reported. Real-world anti‑VEGF treatment for CNV is described in cohorts/case series. (amato2023genetherapyin pages 2-3, shakeel2024phenotypeandgenetic pages 2-3)
  15. Suggested HPO: Choroidal neovascularization (HP:0007701)

  16. Angle-closure glaucoma predisposition (especially ARB with short axial length/narrow angles)

  17. Evidence: ARB cohort shows frequent shallow anterior chamber/narrow angles; misdiagnosis as angle-closure glaucoma common; preventive iridotomy and glaucoma surgeries used. (zhao2024clinicalandgenetic pages 1-2)
  18. Suggested HPO: Angle-closure glaucoma (HP:0001132); Shallow anterior chamber (HP:0000594); Short axial length (HP:0000568)

3.2 Phenotype characteristics (age of onset, severity, progression)

  • BVMD onset and course: median onset ~19 years (range 4–65), with slow progression and variable expressivity; imaging-based staging shows lesion composition evolves over time. (bianco2024multimodalimagingin pages 1-2, amato2023genetherapyin pages 2-3)
  • Vision statistics in BVMD: one review reports ~75% of patients <40 years maintain ≥20/40 in at least one eye; ~75% of patients >30 years have ≤20/100 in at least one eye. (bianco2024multimodalimagingin pages 1-2)
  • ARB onset and course: in a 2024 Chinese cohort (n=17), average onset 30.53 years (range 9–68) with acuity from light perception to 0.8; wide phenotypic variability and frequent anterior segment abnormalities. (zhao2024clinicalandgenetic pages 1-2)

3.3 Quality of life impact

The retrieved evidence does not provide formal QoL instrument results (e.g., EQ‑5D, VFQ‑25). However, progressive central vision loss and macular atrophy logically impair reading/driving and daily functioning; this should be confirmed with disease-specific QoL studies not present in the current corpus. (No direct QoL evidence in retrieved texts)


4. Genetic / Molecular Information

4.1 Causal gene

  • Gene: BEST1 (bestrophin‑1) (amato2023genetherapyin pages 1-2)
  • Protein: 585‑aa homopentameric Ca2+-activated anion channel, localized primarily to the RPE basolateral membrane (and also discussed in relation to ER localization). (amato2023genetherapyin pages 1-2, amato2023genetherapyin pages 7-8)

4.2 Pathogenic variant spectrum and classification

Variant types

  • In a large Chinese ARB study, 54 distinct pathogenic variants included missense, nonsense, canonical splicing, frameshift, in-frame deletions, synonymous/regulatory changes, and deep intronic variants uncovered by WGS. (shi2023comprehensivegeneticanalysis pages 3-5, shi2023comprehensivegeneticanalysis pages 1-2)
  • Deep intronic variants c.1101-491A>G and c.867+97G>A/T caused pseudoexon insertion or intron retention, generating premature termination codons consistent with transcript disruption (NMD) and loss-of-function. (shi2023comprehensivegeneticanalysis pages 1-2, shi2023comprehensivegeneticanalysis pages 2-3)

Mechanistic classes (current understanding)

BEST1 pathogenic variants are described in mechanistic categories: - Loss-of-function (LOF) - Dominant-negative (DN) (enabled by pentameric co-assembly, “poisoning” WT complexes) - Gain-of-function (GOF) (less common; may require silencing + augmentation) Gene therapy design implications follow from this classification. (amato2023genetherapyin pages 4-6, amato2023genetherapyin pages 1-2)

4.3 Allele frequency / founder variants (examples)

  • Founder variant in Chinese ARB: c.867+97G>A (intron 7) accounted for 16% (20/125) of alleles in one Chinese cohort; haplotype analysis supported a founder effect. (shi2023comprehensivegeneticanalysis pages 5-8)
  • Common coding alleles in that cohort included p.Arg255Trp (12.8%), p.Tyr44His (5.6%), and p.Ala195Val (5.6%). (shi2023comprehensivegeneticanalysis pages 5-8)

4.4 Modifier genes / epigenetics / chromosomal abnormalities

No validated modifier genes, epigenetic alterations, or chromosomal abnormalities were identified in the retrieved evidence set.


5. Environmental Information

No clear non-genetic causal environmental exposures were identified in the retrieved evidence. BEST1 bestrophinopathies are primarily genetic. (amato2023genetherapyin pages 2-3)


6. Mechanism / Pathophysiology

6.1 Molecular function and causal chain

Upstream trigger: pathogenic BEST1 variant → altered bestrophin‑1 channel quantity/function.

Core molecular role: bestrophin‑1 is a Ca2+-activated anion (Cl−) channel in RPE; its activity contributes to RPE electrophysiology and the EOG light rise. (amato2023genetherapyin pages 2-3, khan2018normalelectrooculographyin pages 9-13)

Proposed downstream steps (integrated from human and iPSC‑RPE evidence): 1. BEST1 dysfunction perturbs RPE chloride conductance and Ca2+-dependent physiology, including ER calcium handling/store-dependent signaling. (khan2018normalelectrooculographyin pages 9-13, amato2023genetherapyin pages 7-8) 2. Altered Ca2+ homeostasis affects multiple RPE processes (reported/implicated): photoreceptor outer segment (POS) phagocytosis, pigment granule migration, and membrane potential dynamics. (khan2018normalelectrooculographyin pages 9-13) 3. RPE support failure contributes to accumulation of subretinal material, fluid dysregulation (subretinal/intraretinal fluid), and progressive outer retinal disruption leading to photoreceptor dysfunction/degeneration and macular atrophy. (boon2009clinicalandmolecular pages 11-13, pfister2021phenotypicandgenetic pages 1-2)

6.2 Structural biology and pharmacologic modulation (2024 development)

Owji et al. (Nature Communications, Dec 2024) solved ligand-bound bestrophin structures and identified an extracellular positive allosteric site where PABA (4-aminobenzoic acid) binds (same site as GABA in Best2). PABA activates Best1 with EC50 ~192 nM and can rescue currents of multiple patient-derived dominant LOF Best1 mutants (A10T, R218H, L234P, A243T, Q293K, D302A) in co-expression experiments. This provides a mechanistically grounded small-molecule strategy complementary to gene therapy approaches. (owji2024neurotransmitterboundbestrophinchannel pages 5-6, owji2024neurotransmitterboundbestrophinchannel pages 1-2)

6.3 Suggested ontology terms

GO Biological Process (suggested): - Chloride transmembrane transport (GO:1902476) - Calcium ion homeostasis (GO:0055074) - Phagocytosis (GO:0006909) - Visual perception (GO:0007601)

GO Cellular Component (suggested): - Basolateral plasma membrane (GO:0016323) - Endoplasmic reticulum membrane (GO:0005789)

Cell types (CL terms, suggested): - Retinal pigment epithelial cell (CL:0002584) - Rod photoreceptor cell (CL:0000740) - Cone photoreceptor cell (CL:0000742)


7. Anatomical Structures Affected

7.1 Organ/system level

Primary system: Eye / visual system, with disease centered on: - Retina, especially macula (BVMD) and broader posterior pole involvement (ARB). (beryozkin2024bestdiseaseglobal pages 1-2, zhao2024clinicalandgenetic pages 1-2)

7.2 Tissue/cell level

  • Retinal pigment epithelium (RPE) is the key primary affected tissue/cell type (BEST1 expression and electrophysiologic signature). (amato2023genetherapyin pages 1-2)

7.3 Subcellular localization

  • Basolateral membrane of RPE; ER membrane localization also discussed (relevant to Ca2+ regulation). (amato2023genetherapyin pages 1-2, amato2023genetherapyin pages 7-8)

Suggested UBERON terms: - Retina (UBERON:0000966) - Macula lutea (UBERON:0001807) - Retinal pigment epithelium (UBERON:0001994) - Anterior chamber of eye (UBERON:0001769) (relevant to ARB angle closure predisposition)


8. Temporal Development

8.1 Onset

  • BVMD: median ~19 years (range 4–65). (bianco2024multimodalimagingin pages 1-2)
  • ARB: mean onset ~30.5 years (range 9–68) in one 2024 cohort; onset can also occur in childhood in other reports/series. (zhao2024clinicalandgenetic pages 1-2, pfister2021phenotypicandgenetic pages 2-3)

8.2 Progression

  • Generally slowly progressive, with central photoreceptors often viable for decades, supporting a long interventional window. (amato2023genetherapyin pages 2-3)

9. Inheritance and Population

9.1 Inheritance patterns

  • Autosomal dominant: typical for BVMD; also ADVIRC and other BEST1 phenotypes. (bianco2024multimodalimagingin pages 1-2, amato2023genetherapyin pages 2-3)
  • Autosomal recessive: ARB (biallelic variants); recessive BVMD-like presentations exist. (zhao2024clinicalandgenetic pages 1-2, dhoble2024typicalbestvitelliform pages 7-11)

9.2 Epidemiology (statistics from recent sources)

  • BVMD prevalence estimates vary: ~1/10,000 (USA), 2/10,000 (Sweden), 1/20,000 (Minnesota), 1.5/100,000 (Denmark). (bianco2024multimodalimagingin pages 1-2)
  • Israel prevalence estimate for Best disease: 1 in 127,000, with differences by subgroup (1 in 76,000 Arab Muslims; 1 in 145,000 Jews). (beryozkin2024bestdiseaseglobal pages 1-2)

10. Diagnostics

10.1 Core clinical tests and typical findings

  • Electro-oculogram (EOG): hallmark reduced light peak / reduced Arden ratio; however normal EOG can occur in a minority (e.g., 8% in one large series). (amato2023genetherapyin pages 2-3)
  • Full-field ERG: typically normal or mildly reduced in BVMD; can be reduced in ARB. (bianco2024multimodalimagingin pages 1-2, pfister2021phenotypicandgenetic pages 1-2)
  • OCT: essential for staging and quantifying subretinal material/fluid; shows characteristic vitelliform lesion morphology and outer retinal layer disruption. (amato2023genetherapyin pages 2-3, bianco2024multimodalimagingin pages 1-2)
  • FAF / quantitative FAF: helps interpret lipofuscin-related signals and disease evolution; contributes to revised pathogenesis concepts (lipofuscin accumulation may be secondary). (bianco2024multimodalimagingin pages 1-2)
  • OCT-A: detects macular neovascularization and nonexudative CNV. (amato2023genetherapyin pages 2-3, bianco2024multimodalimagingin pages 1-2)
  • Genetic testing: emphasized as “gold standard” due to variable clinical presentation. (beryozkin2024bestdiseaseglobal pages 1-2)

10.2 Differential diagnosis and diagnostic pitfalls

  • BVMD vs AOFVD/pattern dystrophy: similar vitelliform lesions; age of onset and EOG/angiographic features can help, and genetics clarifies. (makati2014electrooculographyandoptical pages 3-4, zhao2024clinicalandgenetic pages 1-2)
  • ARB may be misdiagnosed as angle-closure glaucoma, Best disease, or central serous chorioretinopathy with CNV. (zhao2024clinicalandgenetic pages 1-2, zhao2024clinicalandgenetic pages 2-4)

11. Outcome / Prognosis

11.1 Vision outcomes

  • BVMD prognosis is variable; many younger patients retain good acuity, but later stages with atrophy/fibrosis reduce acuity. Quantitative visual outcomes in one review: 75% <40 years retain ≥20/40 (≥1 eye) while 75% >30 years have ≤20/100 (≥1 eye). (bianco2024multimodalimagingin pages 1-2)

11.2 Prognostic factors

Specific prognostic biomarkers are not established in the retrieved evidence; however, multimodal imaging (OCT staging, ellipsoid zone integrity, neovascularization status) is emphasized for monitoring and prognostication. (bianco2024multimodalimagingin pages 1-2)


12. Treatment

12.1 Current real-world management

No approved disease-modifying pharmacotherapy is established in the retrieved evidence; management focuses on monitoring and treating complications.

Complication-directed care: - Anti-VEGF therapy for CNV/CNVM (e.g., bevacizumab, conbercept) is used when neovascular complications occur. (shakeel2024phenotypeandgenetic pages 2-3, zhao2024clinicalandgenetic pages 2-4) - Angle-closure risk management in ARB: preventive laser peripheral iridotomy and glaucoma surgery (trabeculectomy + iridotomy) were used in a 2024 cohort. (zhao2024clinicalandgenetic pages 1-2, zhao2024clinicalandgenetic pages 2-4)

Suggested MAXO terms (examples): - Anti-VEGF therapy (MAXO:0001298) (term label may vary) - Laser peripheral iridotomy (MAXO term not confirmed in evidence) - Trabeculectomy (MAXO term not confirmed in evidence) - Genetic counseling (MAXO:0000079) (term label may vary)

12.2 Advanced therapeutics and latest research (2023–2024 prioritized)

Gene therapy / gene augmentation (preclinical → clinical)

Preclinical gene augmentation in canine models shows lesion reversal after subretinal AAV delivery with sustained effects up to 245 weeks and no inflammatory response in reported experiments, supporting a translational basis for human trials. (amato2023genetherapyin pages 6-7)

Small-molecule channel activation (Dec 2024)

PABA and related small molecules activate Best1 and can rescue currents for multiple dominant LOF mutants in vitro, suggesting a potential pharmacologic approach for dominant LOF bestrophinopathies. (owji2024neurotransmitterboundbestrophinchannel pages 5-6)

12.3 Clinical trials and real-world implementations

  • NCT05809635 (started 2021-03-30; recruiting): Prospective natural history study for BEST1 vitelliform macular dystrophy; endpoints include OCT, FAF, NIR-AF, qAF, EOG, ERG, perimetry, etc., to define sensitive outcome measures for future clinical trials. (NCT05809635 chunk 1)
  • NCT07185256 (Opus Genetics; 2025; recruiting): Interventional study of subretinal OPGx-BEST1 in BVMD or ARB; includes patient-reported outcomes and genetic eligibility criteria. (NCT07185256 chunk 2)
  • NCT02162953 (Mayo Clinic; completed 2022-12-31): Observational study collecting samples to generate iPSC models of Best disease and other BEST1-related diseases (disease modeling resource). (NCT02162953 chunk 1)

13. Prevention

Primary prevention is not generally possible for monogenic inherited retinal diseases, but genetic counseling, cascade testing, and reproductive options are key.

  • Secondary prevention: early detection through family screening and genetics to enable monitoring for CNV and angle-closure risk (especially in ARB). (beryozkin2024bestdiseaseglobal pages 1-2, zhao2024clinicalandgenetic pages 1-2)

14. Other Species / Natural Disease

  • Naturally occurring disease models are described in dogs (canine multifocal retinopathy due to biallelic cBEST1 mutations), which recapitulate many human features and have been used for preclinical AAV gene augmentation studies. (amato2023genetherapyin pages 6-7)

15. Model Organisms

15.1 Canine model

Canine multifocal retinopathy (cmr) caused by biallelic BEST1 mutations reproduces clinical/molecular/histologic features and has enabled long-term AAV augmentation studies. (amato2023genetherapyin pages 6-7)

15.2 Mouse models

BEST1 knockout mice reportedly show no retinal phenotype, whereas a knock-in model with W93C recapitulates BVMD-like features with dominant inheritance/incomplete penetrance and reduced EOG light peak. (amato2023genetherapyin pages 6-7)

15.3 iPSC-RPE models (human)

Patient-derived iPSC‑RPE models demonstrate reduced phagocytosis and stress-dependent autofluorescent material accumulation, plus altered ER-dependent Ca2+ currents; these systems have been used to test rescue strategies including augmentation and silencing+augmentation for GOF/DN contexts. (khan2018normalelectrooculographyin pages 9-13, amato2023genetherapyin pages 7-8)


Expert opinions and analysis (from authoritative sources)

  • Reviews emphasize that bestrophinopathies are slowly progressive with a wide therapeutic window, and that the presence of quantifiable subretinal material makes them attractive for clinical-trial endpoints. (amato2023genetherapyin pages 1-2)
  • Genetic testing is emphasized as essential/gold standard because phenotypes are variable and can overlap with other maculopathies. (beryozkin2024bestdiseaseglobal pages 1-2)

Direct abstract quotes (where available in retrieved evidence)

  • Gene therapy review: bestrophinopathies are collectively named and BEST1 encodes a channel localized to RPE basolateral membrane (from abstract). (amato2023genetherapyin pages 1-2)
  • Imaging review abstract: “Quantitative fundus autofluorescence studies informed us that lipofuscin accumulation… is unlikely to be a primary effect of the genetic defect.” (bianco2024multimodalimagingin pages 1-2)
  • Owji et al. abstract: “PABA treatment rescues the functional deficiency of patient-derived Best1 mutations.” (owji2024neurotransmitterboundbestrophinchannel pages 1-2)

Gaps / not available in current evidence set

  • MONDO, Orphanet, ICD‑10/11, MeSH identifiers were not present in retrieved texts.
  • Formal QoL metrics and systematic environmental risk/protective factors were not present.
  • Modifier genes and epigenetic signatures were not established in the retrieved evidence corpus.

Key references (URLs and publication dates)

  • Bianco et al. European Journal of Ophthalmology (Mar 2024): https://doi.org/10.1177/11206721231166434 (bianco2024multimodalimagingin pages 1-2)
  • Beryozkin et al. IOVS (Feb 2024): https://doi.org/10.1167/iovs.65.2.39 (beryozkin2024bestdiseaseglobal pages 1-2)
  • Zhao et al. BMC Ophthalmology (Jul 2024): https://doi.org/10.1186/s12886-024-03574-8 (zhao2024clinicalandgenetic pages 1-2)
  • Shi et al. IOVS (Sep 2023): https://doi.org/10.1167/iovs.64.12.37 (shi2023comprehensivegeneticanalysis pages 1-2)
  • Amato et al. Saudi Journal of Ophthalmology (Oct 2023): https://doi.org/10.4103/sjopt.sjopt_175_23 (amato2023genetherapyin pages 1-2)
  • Owji et al. Nature Communications (Dec 2024): https://doi.org/10.1038/s41467-024-54938-z (owji2024neurotransmitterboundbestrophinchannel pages 1-2)
  • ClinicalTrials.gov NCT05809635: https://clinicaltrials.gov/study/NCT05809635 (NCT05809635 chunk 1)
  • ClinicalTrials.gov NCT07185256: https://clinicaltrials.gov/study/NCT07185256 (NCT07185256 chunk 2)
  • ClinicalTrials.gov NCT02162953: https://clinicaltrials.gov/study/NCT02162953 (NCT02162953 chunk 1)

References

  1. (bianco2024multimodalimagingin pages 1-2): Lorenzo Bianco, Alessandro Arrigo, Alessio Antropoli, Alessandro Berni, Andrea Saladino, Manuel AP Vilela, Ahmad M Mansour, Francesco Bandello, and Maurizio Battaglia Parodi. Multimodal imaging in best vitelliform macular dystrophy: literature review and novel insights. European Journal of Ophthalmology, 34:39-51, Mar 2024. URL: https://doi.org/10.1177/11206721231166434, doi:10.1177/11206721231166434. This article has 23 citations and is from a peer-reviewed journal.

  2. (beryozkin2024bestdiseaseglobal pages 1-2): Avigail Beryozkin, Ifat Sher, Miriam Ehrenberg, Dinah Zur, Hadas Newman, Libe Gradstein, Francis Simaan, Ygal Rotenstreich, Nitza Goldenberg-Cohen, Irit Bahar, Anat Blumenfeld, Antonio Rivera, Boris Rosin, Iris Deitch-Harel, Ido Perlman, Hadas Mechoulam, Itay Chowers, Rina Leibu, Tamar Ben-Yosef, Eran Pras, Eyal Banin, Dror Sharon, and Samer Khateb. Best disease: global mutations review, genotype–phenotype correlation, and prevalence analysis in the israeli population. Investigative Opthalmology & Visual Science, 65:39, Feb 2024. URL: https://doi.org/10.1167/iovs.65.2.39, doi:10.1167/iovs.65.2.39. This article has 6 citations.

  3. (amato2023genetherapyin pages 2-3): Alessia Amato, Nida Wongchaisuwat, Andrew Lamborn, Ryan Schmidt, Lesley Everett, Paul Yang, and Mark E. Pennesi. Gene therapy in bestrophinopathies: insights from preclinical studies in preparation for clinical trials. Saudi Journal of Ophthalmology, 37:287-295, Oct 2023. URL: https://doi.org/10.4103/sjopt.sjopt_175_23, doi:10.4103/sjopt.sjopt_175_23. This article has 8 citations.

  4. (owji2024neurotransmitterboundbestrophinchannel pages 5-6): Aaron P. Owji, Jingyun Dong, Alec Kittredge, Jiali Wang, Yu Zhang, and Tingting Yang. Neurotransmitter-bound bestrophin channel structures reveal small molecule drug targeting sites for disease treatment. Nature Communications, Dec 2024. URL: https://doi.org/10.1038/s41467-024-54938-z, doi:10.1038/s41467-024-54938-z. This article has 6 citations and is from a highest quality peer-reviewed journal.

  5. (zhao2024clinicalandgenetic pages 1-2): Dongsheng Zhao, Victoria Y. Gu, Yafu Wang, Jie Peng, Jiao Lyu, Ping Fei, Yu Xu, Xiang Zhang, and Peiquan Zhao. Clinical and genetic features in autosomal recessive bestrophinopathy in chinese cohort. BMC Ophthalmology, Jul 2024. URL: https://doi.org/10.1186/s12886-024-03574-8, doi:10.1186/s12886-024-03574-8. This article has 4 citations and is from a peer-reviewed journal.

  6. (shi2023comprehensivegeneticanalysis pages 5-8): Jie-Feng Shi, Lu Tian, Tengyang Sun, Xiao Zhang, K. Xu, Yue Xie, Xiaoyan Peng, Xin Tang, Zidan Jin, and Yang Li. Comprehensive genetic analysis unraveled the missing heritability and a founder variant of best1 in a chinese cohort with autosomal recessive bestrophinopathy. Investigative Opthalmology & Visual Science, 64:37, Sep 2023. URL: https://doi.org/10.1167/iovs.64.12.37, doi:10.1167/iovs.64.12.37. This article has 8 citations.

  7. (shi2023comprehensivegeneticanalysis pages 1-2): Jie-Feng Shi, Lu Tian, Tengyang Sun, Xiao Zhang, K. Xu, Yue Xie, Xiaoyan Peng, Xin Tang, Zidan Jin, and Yang Li. Comprehensive genetic analysis unraveled the missing heritability and a founder variant of best1 in a chinese cohort with autosomal recessive bestrophinopathy. Investigative Opthalmology & Visual Science, 64:37, Sep 2023. URL: https://doi.org/10.1167/iovs.64.12.37, doi:10.1167/iovs.64.12.37. This article has 8 citations.

  8. (dhoble2024typicalbestvitelliform pages 1-7): Pankaja Dhoble, Anthony G. Robson, Andrew R. Webster, and Michel Michaelides. Typical best vitelliform dystrophy secondary to biallelic variants in best1. Ophthalmic Genetics, 45:38-43, Mar 2024. URL: https://doi.org/10.1080/13816810.2023.2188227, doi:10.1080/13816810.2023.2188227. This article has 2 citations and is from a peer-reviewed journal.

  9. (dhoble2024typicalbestvitelliform pages 7-11): Pankaja Dhoble, Anthony G. Robson, Andrew R. Webster, and Michel Michaelides. Typical best vitelliform dystrophy secondary to biallelic variants in best1. Ophthalmic Genetics, 45:38-43, Mar 2024. URL: https://doi.org/10.1080/13816810.2023.2188227, doi:10.1080/13816810.2023.2188227. This article has 2 citations and is from a peer-reviewed journal.

  10. (makati2014electrooculographyandoptical pages 3-4): Ravie Makati, Diana Shechtman, Eulogio Besada, and Joseph J. Pizzimenti. Electrooculography and optical coherence tomography reveal late-onset best disease. Optometry and Vision Science, 91:e274–e277, Nov 2014. URL: https://doi.org/10.1097/opx.0000000000000403, doi:10.1097/opx.0000000000000403. This article has 4 citations and is from a peer-reviewed journal.

  11. (amato2023genetherapyin pages 1-2): Alessia Amato, Nida Wongchaisuwat, Andrew Lamborn, Ryan Schmidt, Lesley Everett, Paul Yang, and Mark E. Pennesi. Gene therapy in bestrophinopathies: insights from preclinical studies in preparation for clinical trials. Saudi Journal of Ophthalmology, 37:287-295, Oct 2023. URL: https://doi.org/10.4103/sjopt.sjopt_175_23, doi:10.4103/sjopt.sjopt_175_23. This article has 8 citations.

  12. (khan2018normalelectrooculographyin pages 9-13): Kamron N. Khan, Farrah Islam, Graham E. Holder, Anthony Robson, Andrew R. Webster, Anthony T. Moore, and Michel Michaelides. Normal electrooculography in best disease and autosomal recessive bestrophinopathy. Retina, 38:379–386, Feb 2018. URL: https://doi.org/10.1097/iae.0000000000001523, doi:10.1097/iae.0000000000001523. This article has 23 citations.

  13. (amato2023genetherapyin pages 6-7): Alessia Amato, Nida Wongchaisuwat, Andrew Lamborn, Ryan Schmidt, Lesley Everett, Paul Yang, and Mark E. Pennesi. Gene therapy in bestrophinopathies: insights from preclinical studies in preparation for clinical trials. Saudi Journal of Ophthalmology, 37:287-295, Oct 2023. URL: https://doi.org/10.4103/sjopt.sjopt_175_23, doi:10.4103/sjopt.sjopt_175_23. This article has 8 citations.

  14. (shi2023comprehensivegeneticanalysis pages 2-2): Jie-Feng Shi, Lu Tian, Tengyang Sun, Xiao Zhang, K. Xu, Yue Xie, Xiaoyan Peng, Xin Tang, Zidan Jin, and Yang Li. Comprehensive genetic analysis unraveled the missing heritability and a founder variant of best1 in a chinese cohort with autosomal recessive bestrophinopathy. Investigative Opthalmology & Visual Science, 64:37, Sep 2023. URL: https://doi.org/10.1167/iovs.64.12.37, doi:10.1167/iovs.64.12.37. This article has 8 citations.

  15. (shakeel2024phenotypeandgenetic pages 2-3): Areeba Shakeel, Darshan M Bhatt, Lingam Gopal, Rajiv Raman, Chetan Rao, S. Sripriya, and Muna Bhende. Phenotype and genetic spectrum of six indian patients with bestrophinopathy. Taiwan Journal of Ophthalmology, 14:602-608, Oct 2024. URL: https://doi.org/10.4103/tjo.tjo-d-24-00080, doi:10.4103/tjo.tjo-d-24-00080. This article has 2 citations.

  16. (cideciyan2023photoreceptorfunctionand pages 6-8): Artur V. Cideciyan, Samuel G. Jacobson, Alexander Sumaroka, Malgorzata Swider, Arun K. Krishnan, Rebecca Sheplock, Alexandra V. Garafalo, Karina E. Guziewicz, Gustavo D. Aguirre, William A. Beltran, Yoshitsugu Matsui, Mineo Kondo, and Elise Heon. Photoreceptor function and structure in retinal degenerations caused by biallelic best1 mutations. Vision Research, 203:108157, Feb 2023. URL: https://doi.org/10.1016/j.visres.2022.108157, doi:10.1016/j.visres.2022.108157. This article has 5 citations and is from a peer-reviewed journal.

  17. (amato2023genetherapyin pages 7-8): Alessia Amato, Nida Wongchaisuwat, Andrew Lamborn, Ryan Schmidt, Lesley Everett, Paul Yang, and Mark E. Pennesi. Gene therapy in bestrophinopathies: insights from preclinical studies in preparation for clinical trials. Saudi Journal of Ophthalmology, 37:287-295, Oct 2023. URL: https://doi.org/10.4103/sjopt.sjopt_175_23, doi:10.4103/sjopt.sjopt_175_23. This article has 8 citations.

  18. (shi2023comprehensivegeneticanalysis pages 3-5): Jie-Feng Shi, Lu Tian, Tengyang Sun, Xiao Zhang, K. Xu, Yue Xie, Xiaoyan Peng, Xin Tang, Zidan Jin, and Yang Li. Comprehensive genetic analysis unraveled the missing heritability and a founder variant of best1 in a chinese cohort with autosomal recessive bestrophinopathy. Investigative Opthalmology & Visual Science, 64:37, Sep 2023. URL: https://doi.org/10.1167/iovs.64.12.37, doi:10.1167/iovs.64.12.37. This article has 8 citations.

  19. (shi2023comprehensivegeneticanalysis pages 2-3): Jie-Feng Shi, Lu Tian, Tengyang Sun, Xiao Zhang, K. Xu, Yue Xie, Xiaoyan Peng, Xin Tang, Zidan Jin, and Yang Li. Comprehensive genetic analysis unraveled the missing heritability and a founder variant of best1 in a chinese cohort with autosomal recessive bestrophinopathy. Investigative Opthalmology & Visual Science, 64:37, Sep 2023. URL: https://doi.org/10.1167/iovs.64.12.37, doi:10.1167/iovs.64.12.37. This article has 8 citations.

  20. (amato2023genetherapyin pages 4-6): Alessia Amato, Nida Wongchaisuwat, Andrew Lamborn, Ryan Schmidt, Lesley Everett, Paul Yang, and Mark E. Pennesi. Gene therapy in bestrophinopathies: insights from preclinical studies in preparation for clinical trials. Saudi Journal of Ophthalmology, 37:287-295, Oct 2023. URL: https://doi.org/10.4103/sjopt.sjopt_175_23, doi:10.4103/sjopt.sjopt_175_23. This article has 8 citations.

  21. (boon2009clinicalandmolecular pages 11-13): CAMIEL J. F. BOON, THOMAS THEELEN, ELISABETH H. HOEFSLOOT, MARY J. VAN SCHOONEVELD, JAN E. E. KEUNEN, FRANS P. M. CREMERS, B JEROEN KLEVERING, and CAREL B. HOYNG. Clinical and molecular genetic analysis of best vitelliform macular dystrophy. Retina, 29:835-847, Jun 2009. URL: https://doi.org/10.1097/iae.0b013e31819d4fda, doi:10.1097/iae.0b013e31819d4fda. This article has 88 citations.

  22. (pfister2021phenotypicandgenetic pages 1-2): Tyler A. Pfister, Wadih M. Zein, Catherine A. Cukras, Hatice N. Sen, Ramiro S. Maldonado, Laryssa A. Huryn, and Robert B. Hufnagel. Phenotypic and genetic spectrum of autosomal recessive bestrophinopathy and best vitelliform macular dystrophy. Investigative Opthalmology & Visual Science, 62:22, May 2021. URL: https://doi.org/10.1167/iovs.62.6.22, doi:10.1167/iovs.62.6.22. This article has 22 citations.

  23. (owji2024neurotransmitterboundbestrophinchannel pages 1-2): Aaron P. Owji, Jingyun Dong, Alec Kittredge, Jiali Wang, Yu Zhang, and Tingting Yang. Neurotransmitter-bound bestrophin channel structures reveal small molecule drug targeting sites for disease treatment. Nature Communications, Dec 2024. URL: https://doi.org/10.1038/s41467-024-54938-z, doi:10.1038/s41467-024-54938-z. This article has 6 citations and is from a highest quality peer-reviewed journal.

  24. (pfister2021phenotypicandgenetic pages 2-3): Tyler A. Pfister, Wadih M. Zein, Catherine A. Cukras, Hatice N. Sen, Ramiro S. Maldonado, Laryssa A. Huryn, and Robert B. Hufnagel. Phenotypic and genetic spectrum of autosomal recessive bestrophinopathy and best vitelliform macular dystrophy. Investigative Opthalmology & Visual Science, 62:22, May 2021. URL: https://doi.org/10.1167/iovs.62.6.22, doi:10.1167/iovs.62.6.22. This article has 22 citations.

  25. (zhao2024clinicalandgenetic pages 2-4): Dongsheng Zhao, Victoria Y. Gu, Yafu Wang, Jie Peng, Jiao Lyu, Ping Fei, Yu Xu, Xiang Zhang, and Peiquan Zhao. Clinical and genetic features in autosomal recessive bestrophinopathy in chinese cohort. BMC Ophthalmology, Jul 2024. URL: https://doi.org/10.1186/s12886-024-03574-8, doi:10.1186/s12886-024-03574-8. This article has 4 citations and is from a peer-reviewed journal.

  26. (NCT05809635 chunk 1): Stephen H. Tsang. Study of BEST1 Vitelliform Macular Dystrophy. Columbia University. 2021. ClinicalTrials.gov Identifier: NCT05809635

  27. (NCT07185256 chunk 2): Safety and Tolerability of Subretinally Injected OPGx-BEST1 in Patients With Best Vitelliform Macular Dystrophy (BVMD) or Autosomal-Recessive Bestrophinopathy (ARB). Opus Genetics, Inc. 2025. ClinicalTrials.gov Identifier: NCT07185256

  28. (NCT02162953 chunk 1): Alan D. Marmorstein, Ph.D.. Stem Cell Models of Best Disease and Other Retinal Degenerative Diseases.. Mayo Clinic. 2014. ClinicalTrials.gov Identifier: NCT02162953

{ }

Source YAML

click to show
name: BEST1 Bestrophinopathies
creation_date: '2026-04-04T12:00:00Z'
updated_date: '2026-04-06T23:35:31Z'
description: >-
  Bestrophinopathies are a spectrum of inherited retinal dystrophies caused by
  pathogenic variants in BEST1, which encodes bestrophin-1, a calcium-activated
  chloride channel localized to the basolateral membrane of the retinal pigment
  epithelium (RPE). BEST1 dysfunction disrupts RPE ion transport and fluid
  homeostasis, leading to subretinal fluid accumulation, vitelliform (egg-yolk)
  lesions, and progressive macular and retinal degeneration. The spectrum
  includes autosomal dominant Best vitelliform macular dystrophy (BVMD), autosomal
  dominant vitreoretinochoroidopathy (ADVIRC), autosomal dominant microcornea
  rod-cone dystrophy cataract and posterior staphyloma (MRCS), BEST1-associated
  retinitis pigmentosa, and autosomal recessive bestrophinopathy (ARB). Over
  250 BEST1 mutations have been described, with dominant-negative and
  loss-of-function mechanisms underlying AD and AR forms respectively.
category: Genetic
parents:
- Inherited Retinal Dystrophy
- Macular Dystrophy
disease_term:
  preferred_term: BEST1 bestrophinopathy spectrum
  term:
    id: MONDO:0000390
    label: vitelliform macular dystrophy
has_subtypes:
- name: BVMD
  display_name: Best Vitelliform Macular Dystrophy (BVMD)
  subtype_term:
    preferred_term: Best vitelliform macular dystrophy
    term:
      id: MONDO:0007931
      label: vitelliform macular dystrophy 2
  description: >
    Most common bestrophinopathy. Autosomal dominant with incomplete penetrance
    and variable expression. Typically presents in childhood with a central
    macular vitelliform (egg-yolk) lesion that progresses through six stages:
    previtelliform, vitelliform, vitelliruptive, pseudohypopion, atrophic, and
    cicatricial. Visual acuity is initially preserved but declines in later stages.
    Full-field ERG is normal; EOG shows reduced Arden ratio (less than 1.5).
    Mild hyperopia is common.
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "The VMD phenotype consists of a prominent raised central macular lesion that undergoes morphological changes classified into six stages: previtelliform, vitelliform, vitelliruptive, pseudohypopion, atrophic, and cicatricial."
    explanation: Describes the six classical stages of BVMD macular lesion progression.
- name: ARB
  display_name: Autosomal Recessive Bestrophinopathy (ARB)
  subtype_term:
    preferred_term: autosomal recessive bestrophinopathy
    term:
      id: MONDO:0012733
      label: autosomal recessive bestrophinopathy
  description: >
    Caused by biallelic (homozygous or compound heterozygous) BEST1 mutations
    resulting in absent functional bestrophin-1. Presents with central visual
    loss in the first two decades. Features include macular changes resembling
    BVMD vitelliruptive/atrophic stages, extramacular punctate deposits,
    subretinal and intraretinal fluid, hyperopia, short axial length,
    severely reduced EOG Arden ratio (1.0 or less), and reduced full-field ERG.
    Angle-closure glaucoma and amblyopia may co-occur.
  evidence:
  - reference: PMID:30578502
    reference_title: "Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "Autosomal recessive bestrophinopathy (ARB) results from a total absence of functional bestrophin-1 protein owing to two BEST1 mutations, one on each of the chromosomes."
    explanation: Confirms ARB results from biallelic BEST1 mutations causing total absence of functional protein.
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "ARB displays macular changes resembling the vitelliruptive, atrophic, and cicatricial stages of VMD. The phenotype additionally encompasses extramacular punctate deposits, intraretinal and subretinal fluid (SRF) accumulation, punctate or diffuse fundus hyperautofluorescence, hyperopia, short axial-length, central visual field loss, severely decreased Arden ratio"
    explanation: Comprehensive description of ARB phenotype distinguishing it from BVMD.
- name: MRCS
  display_name: Microcornea, Rod-Cone Dystrophy, Cataract, and Posterior Staphyloma (MRCS)
  subtype_term:
    preferred_term: MRCS syndrome
    term:
      id: MONDO:0033644
      label: microcornea, rod-cone dystrophy, cataract, and posterior staphyloma 1
  description: >
    Rare autosomal dominant condition with anterior segment involvement. Features
    include microcornea, rod-cone dystrophy, early-onset cataract, and posterior
    staphyloma. Represents the most complex bestrophinopathy phenotype extending
    beyond pure macular disease.
- name: BEST1-RP
  display_name: BEST1-Associated Retinitis Pigmentosa
  subtype_term:
    preferred_term: BEST1-associated retinitis pigmentosa
    term:
      id: MONDO:0019200
      label: retinitis pigmentosa
  description: >
    Rare autosomal dominant form presenting as classical retinitis pigmentosa
    with rod-cone dystrophy, nyctalopia, peripheral visual field loss, and
    attenuated retinal vessels. Caused by specific BEST1 mutations that
    produce a rod-cone dystrophy phenotype rather than typical macular lesions.
pathophysiology:
- name: BEST1 Channel Dysfunction
  description: >
    Pathogenic variants in BEST1 disrupt the calcium-activated chloride channel
    function of bestrophin-1. The channel normally forms a stable homopentamer
    in the RPE basolateral membrane, mediating transepithelial ion transport,
    regulation of intracellular calcium signaling, and RPE cell volume. Dominant
    mutations cause a dominant-negative effect while recessive mutations result
    in loss of function.
  genes:
  - preferred_term: BEST1
    term:
      id: hgnc:12703
      label: BEST1
  molecular_functions:
  - preferred_term: calcium-activated chloride channel activity
    term:
      id: GO:0005229
      label: intracellularly calcium-gated chloride channel activity
  cell_types:
  - preferred_term: Retinal Pigment Epithelial Cell
    term:
      id: CL:0002586
      label: retinal pigment epithelial cell
  biological_processes:
  - preferred_term: Chloride Transport
    term:
      id: GO:0006821
      label: chloride transport
    modifier: DECREASED
  evidence:
  - reference: PMID:34612806
    reference_title: "Structure and Function of the Bestrophin family of calcium-activated chloride channels."
    supports: SUPPORT
    snippet: "Bestrophins are a family of calcium-activated chloride channels (CaCCs) with relevance to human physiology and a myriad of eye diseases termed \"bestrophinopathies\"."
    explanation: Confirms bestrophins are CaCCs and their dysfunction causes bestrophinopathies.
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    snippet: "BEST1 acts as a multifunctional channel protein responsible for mediating transepithelial ion transport, regulation of intracellular calcium signaling and RPE cell volume, and modulation of the homeostatic milieu in the subretinal space"
    explanation: Describes the multifunctional role of BEST1 in RPE physiology.
  downstream:
  - target: RPE-Photoreceptor Interface Disruption
    description: Channel dysfunction impairs ion and fluid homeostasis at the RPE-photoreceptor interface.
- name: RPE-Photoreceptor Interface Disruption
  description: >
    BEST1 dysfunction leads to loss of the native extracellular compartmentalization
    of photoreceptor outer segments. RPE apical microvillar ensheathment of
    cone outer segments is lost, and the insoluble interphotoreceptor matrix is
    compromised. This results in retina-wide microdetachments between RPE and
    photoreceptors that are modulated by light exposure.
  cell_types:
  - preferred_term: Retinal Pigment Epithelial Cell
    term:
      id: CL:0002586
      label: retinal pigment epithelial cell
  evidence:
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    snippet: "Mutations in the BEST1 gene cause detachment of the retina and degeneration of photoreceptor (PR) cells due to a primary channelopathy in the neighboring retinal pigment epithelium (RPE) cells."
    explanation: Directly states that BEST1 mutations cause retinal detachment and PR degeneration from RPE channelopathy.
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: "In vivo imaging demonstrated a retina-wide RPE-PR microdetachment, which contracted with dark adaptation and expanded upon exposure to a moderate intensity of light."
    explanation: Canine model demonstrates retina-wide microdetachments modulated by light.
  downstream:
  - target: Subretinal Fluid Accumulation and Vitelliform Lesions
    description: Loss of RPE-PR interface integrity leads to subretinal fluid and lipofuscin accumulation.
- name: Subretinal Fluid Accumulation and Vitelliform Lesions
  description: >
    Impaired RPE fluid transport and disrupted photoreceptor outer segment
    phagocytosis lead to subretinal fluid accumulation and deposits of
    lipofuscin and unphagocytosed outer segment material. These form the
    characteristic vitelliform (egg-yolk) lesions. In BVMD, lesions are
    typically central macular; in ARB, they are more extensive with
    extramacular involvement.
  cell_types:
  - preferred_term: Retinal Pigment Epithelial Cell
    term:
      id: CL:0002586
      label: retinal pigment epithelial cell
  evidence:
  - reference: PMID:30578502
    reference_title: "Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "The yellowish lesions are larger and more extensive-extending beyond the arcades-than in the typical autosomal dominant Best disease."
    explanation: Describes extent of vitelliform lesions in ARB versus BVMD.
  downstream:
  - target: Progressive Macular and Retinal Degeneration
    description: Chronic subretinal fluid and deposits lead to progressive RPE atrophy and photoreceptor loss.
- name: Progressive Macular and Retinal Degeneration
  description: >
    Chronic disruption of the RPE-photoreceptor interface leads to progressive
    RPE atrophy, photoreceptor degeneration, and macular atrophy. In BVMD
    this predominantly affects the macula; in ARB the degeneration is more
    widespread with panretinal involvement. Late stages may include subretinal
    fibrosis and choroidal neovascularization.
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "This study suggests that arVMD is part of a continuum of autosomal recessive and dominant BEST1-related retinopathies."
    explanation: Confirms that AD and AR forms represent a disease continuum of progressive retinal degeneration.
  - reference: PMID:30578502
    reference_title: "Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "As panretinal photoreceptor dysfunction progresses with advancing age, full-field (FF) ERG shows delayed rod and cone responses."
    explanation: Documents progressive photoreceptor dysfunction over time in bestrophinopathy.
phenotypes:
- name: Vitelliform Macular Lesion
  category: Ophthalmological
  frequency: VERY_FREQUENT
  diagnostic: true
  description: >
    Characteristic yellow egg-yolk-like subretinal deposit at the macula.
    Central and focal in BVMD; more extensive with extramacular involvement in ARB.
  phenotype_term:
    preferred_term: Vitelliform macular lesion
    term:
      id: HP:0030500
      label: Yellow/white macular lesion
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "The VMD phenotype consists of a prominent raised central macular lesion that undergoes morphological changes classified into six stages: previtelliform, vitelliform, vitelliruptive, pseudohypopion, atrophic, and cicatricial."
    explanation: Describes the hallmark vitelliform macular lesion and its staging.
- name: Reduced Visual Acuity
  category: Ophthalmological
  frequency: VERY_FREQUENT
  phenotype_term:
    preferred_term: Reduced visual acuity
    term:
      id: HP:0007663
      label: Reduced visual acuity
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "The best corrected visual acuity (BCVA) is mildly decreased to 20/50 on average (range 20/20 to 20/200), until later stages, where natural progression and complication create a steep decline."
    explanation: Documents visual acuity decline particularly in later disease stages.
- name: Abnormal Electrooculogram
  category: Ophthalmological
  frequency: VERY_FREQUENT
  diagnostic: true
  description: >
    Reduced EOG Arden ratio is a hallmark of bestrophinopathies. In BVMD,
    Arden ratio is moderately decreased (less than 1.5). In ARB, it is
    severely decreased (1.0 or less).
  phenotype_term:
    preferred_term: Abnormal electrooculogram
    term:
      id: HP:0030453
      label: Abnormal visual electrophysiology
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "electrophysiology changes show a moderately decreased electro-oculography (EOG) Arden ratio of less than 1.5 with frequently normal full-field electroretinogram (ffERG)."
    explanation: Documents the characteristic EOG abnormality in BVMD with normal ERG.
- name: Macular Dystrophy
  category: Ophthalmological
  frequency: VERY_FREQUENT
  phenotype_term:
    preferred_term: Macular dystrophy
    term:
      id: HP:0007754
      label: Macular dystrophy
- name: Macular Atrophy
  category: Ophthalmological
  frequency: FREQUENT
  description: >
    Late-stage finding with RPE and photoreceptor loss in the macular region.
  phenotype_term:
    preferred_term: Macular atrophy
    term:
      id: HP:0007401
      label: Macular atrophy
- name: Hypermetropia
  category: Ophthalmological
  frequency: FREQUENT
  subtype: ARB
  description: >
    Hyperopia and short axial length are associated with ARB.
  phenotype_term:
    preferred_term: Hypermetropia
    term:
      id: HP:0000540
      label: Hypermetropia
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "The phenotype additionally encompasses extramacular punctate deposits, intraretinal and subretinal fluid (SRF) accumulation, punctate or diffuse fundus hyperautofluorescence, hyperopia, short axial-length"
    explanation: Hyperopia is listed as part of the ARB phenotype.
- name: Retinal Detachment
  category: Ophthalmological
  frequency: OCCASIONAL
  phenotype_term:
    preferred_term: Retinal detachment
    term:
      id: HP:0000541
      label: Retinal detachment
  evidence:
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    snippet: "Mutations in the BEST1 gene cause detachment of the retina and degeneration of photoreceptor (PR) cells due to a primary channelopathy in the neighboring retinal pigment epithelium (RPE) cells."
    explanation: Retinal detachment is a direct consequence of BEST1 mutations.
- name: Microcornea
  category: Ophthalmological
  frequency: VERY_RARE
  subtype: MRCS
  phenotype_term:
    preferred_term: Microcornea
    term:
      id: HP:0000482
      label: Microcornea
- name: Rod-Cone Dystrophy
  category: Ophthalmological
  frequency: OCCASIONAL
  description: >
    Seen in MRCS and BEST1-associated RP subtypes.
  phenotype_term:
    preferred_term: Rod-cone dystrophy
    term:
      id: HP:0000510
      label: Rod-cone dystrophy
- name: Cataract
  category: Ophthalmological
  frequency: VERY_RARE
  subtype: MRCS
  description: >
    Early-onset cataract in MRCS subtype.
  phenotype_term:
    preferred_term: Cataract
    term:
      id: HP:0000518
      label: Cataract
- name: Nyctalopia
  category: Ophthalmological
  frequency: OCCASIONAL
  subtype: BEST1-RP
  phenotype_term:
    preferred_term: Nyctalopia
    term:
      id: HP:0000662
      label: Nyctalopia
- name: RPE Atrophy
  category: Ophthalmological
  frequency: FREQUENT
  phenotype_term:
    preferred_term: Retinal pigment epithelial atrophy
    term:
      id: HP:0007722
      label: Retinal pigment epithelial atrophy
  evidence:
  - reference: PMID:30578502
    reference_title: "Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "decreased AF reflects RPE atrophy."
    explanation: RPE atrophy is documented as a feature on fundus autofluorescence imaging.
- name: Angle-Closure Glaucoma
  category: Ophthalmological
  frequency: OCCASIONAL
  subtype: ARB
  phenotype_term:
    preferred_term: Glaucoma
    term:
      id: HP:0000501
      label: Glaucoma
  evidence:
  - reference: PMID:30578502
    reference_title: "Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "Refractive error is hyperopia, predisposing these eyes for acute angle-closure glaucoma."
    explanation: Hyperopia in ARB predisposes to angle-closure glaucoma.
genetic:
- name: BEST1
  gene_term:
    preferred_term: BEST1
    term:
      id: hgnc:12703
      label: BEST1
  association: Causative
  features: >
    Over 250 pathogenic variants described. Dominant mutations (missense) cause
    dominant-negative channel dysfunction in BVMD, ADVIRC, MRCS, and RP.
    Recessive mutations (missense, nonsense, frameshift) cause loss of function
    in ARB. Most mutations cluster in the transmembrane domains and cytoplasmic
    N-terminus. The p.Ala243Val mutation is the most common BVMD-associated variant.
  variants:
  - name: Dominant missense variants
    description: >
      Cause BVMD, ADVIRC, MRCS, or RP through dominant-negative mechanism.
      Heterozygous pathogenic variants sufficient for disease.
  - name: Biallelic loss-of-function variants
    description: >
      Homozygous or compound heterozygous variants causing ARB through
      complete loss of functional bestrophin-1 protein.
  evidence:
  - reference: PMID:34015078
    reference_title: "Phenotypic and Genetic Spectrum of Autosomal Recessive Bestrophinopathy and Best Vitelliform Macular Dystrophy."
    supports: SUPPORT
    snippet: "mutations in the BEST1 protein lead to a collection of retinopathies: Best vitelliform macular dystrophy (VMD) (OMIM-153700), autosomal dominant vitreoretinochoroidopathy (ADVIRC) and microcornea, rod-cone dystrophy, cataract, and posterior staphyloma syndrome (MRCS) (OMIM-193220), retinitis pigmentosa (RP) (OMIM-613914), and autosomal recessive bestrophinopathy (ARB) (OMIM-611809)."
    explanation: Enumerates the full spectrum of BEST1-related retinopathies.
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    snippet: "The most common IRD due to a primary RPE defect is caused by mutations in BEST1"
    explanation: Confirms BEST1 mutations as the most common cause of primary RPE-mediated inherited retinal dystrophy.
inheritance:
- name: Autosomal dominant
  description: >
    BVMD, ADVIRC, MRCS, and BEST1-associated RP are autosomal dominant with
    incomplete penetrance and variable expressivity.
  inheritance_term:
    preferred_term: Autosomal dominant
    term:
      id: HP:0000006
      label: Autosomal dominant inheritance
- name: Autosomal recessive
  description: >
    ARB is autosomal recessive, caused by biallelic BEST1 loss-of-function mutations.
  inheritance_term:
    preferred_term: Autosomal recessive
    term:
      id: HP:0000007
      label: Autosomal recessive inheritance
treatments:
- name: Anti-VEGF Therapy
  description: >
    Intravitreal anti-VEGF injections for choroidal neovascularization
    complicating late-stage BVMD or ARB.
  treatment_term:
    preferred_term: anti-VEGF pharmacotherapy
    term:
      id: MAXO:0000058
      label: pharmacotherapy
- name: Low Vision Aids and Rehabilitation
  description: >
    Visual rehabilitation and low vision aids for patients with progressive
    central vision loss.
  treatment_term:
    preferred_term: supportive care
    term:
      id: MAXO:0000950
      label: supportive care
- name: Genetic Counseling
  description: >
    Recommended for all affected families. Important to distinguish AD
    versus AR inheritance for recurrence risk counseling.
  treatment_term:
    preferred_term: genetic counseling
    term:
      id: MAXO:0000079
      label: genetic counseling
- name: Gene Therapy (Investigational)
  description: >
    Subretinal AAV2-mediated BEST1 gene augmentation therapy has shown
    reversal of retinal detachments and correction of RPE-photoreceptor
    interface abnormalities in canine models. Phase 1/2 clinical trials
    (OPGx-BEST1/BIRD-1) are underway for BVMD and ARB.
  treatment_term:
    preferred_term: gene therapy
    term:
      id: MAXO:0001001
      label: gene therapy
  evidence:
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: "Subretinal BEST1 gene augmentation therapy using adeno-associated virus 2 reversed not only clinically detectable subretinal lesions but also the diffuse microdetachments."
    explanation: Canine BEST1 gene therapy reverses both macroscopic and microscopic retinal detachments.
  - reference: PMID:29507198
    reference_title: "BEST1 gene therapy corrects a diffuse retina-wide microdetachment modulated by light exposure."
    supports: SUPPORT
    evidence_source: MODEL_ORGANISM
    snippet: "Human translation of canine BEST1 gene therapy success in reversal of macro- and microdetachments through restoration of cytoarchitecture at the RPE-PR interface has promise to result in improved visual function and prevent disease progression in patients affected with bestrophinopathies."
    explanation: Authors state translational promise of canine gene therapy results for human bestrophinopathies.
prevalence:
- population: Global
  percentage: Rare
  notes: >
    BVMD prevalence estimated at 1 in 16,500 to 1 in 21,000 (Olmsted County, Minnesota).
    ARB and MRCS are considerably rarer.
notes: >-
  The bestrophinopathies represent a disease continuum rather than strictly
  distinct clinical entities. Principal component analysis of clinical features
  demonstrates that autosomal recessively inherited VMD falls between autosomal
  dominant VMD and ARB on the disease spectrum. Tritan-axis color vision deficit
  has been reported as an associated finding in ARB.