Inherited Retinal Degenerative Disease Registry
Public ClinicalTrials.gov record NCT02435940. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
Foundation Fighting Blindness My Retina Tracker Registry
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
The My Retina Tracker® Registry is sponsored by the Foundation Fighting Blindness and is for people affected by one of the rare inherited retinal degenerative diseases studied by the Foundation. It is a patient-initiated registry accessible via a secure on-line portal at www.MyRetinaTracker.org. Affected individuals who register are guided to create a profile that captures their perspective on their retinal disease and its progress; family history; genetic testing results; preventive measures; general health and interest in participation in research studies. The participants may also choose to ask their clinician to add clinical measurements and results at each clinical visit. Participants are urged to update the information regularly to create longitudinal records of their disease, from their own perspective, and their clinical progress. The overall goals of the Registry are: to better understand the diversity within the inherited retinal degenerative diseases; to understand the prevalence of the different diseases and gene variants; to assist in the establishment of genotype-phenotype relationships; to help understand the natural history of the diseases; to help accelerate research and development of clinical trials for treatments; and to provide a tool to investigators that can assist with recruitment for research studies and clinical trials.
Study identification
- NCT ID
- NCT02435940
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 20,000 participants
Conditions and interventions
Conditions
- Eye Diseases Hereditary
- Retinal Disease
- Achromatopsia
- Bardet-Biedl Syndrome
- Bassen-Kornzweig Syndrome
- Batten Disease
- Best Disease
- Choroidal Dystrophy
- Choroideremia
- Cone Dystrophy
- Cone-Rod Dystrophy
- Congenital Stationary Night Blindness
- Enhanced S-Cone Syndrome
- Fundus Albipunctatus
- Goldmann-Favre Syndrome
- Gyrate Atrophy
- Juvenile Macular Degeneration
- Kearns-Sayre Syndrome
- Leber Congenital Amaurosis
- Refsum Syndrome
- Retinitis Pigmentosa
- Retinitis Punctata Albescens
- Retinoschisis
- Rod-Cone Dystrophy
- Rod Dystrophy
- Rod Monochromacy
- Stargardt Disease
- Usher Syndrome
Interventions
Not listed
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Accepts healthy volunteers
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- May 31, 2014
- Primary completion
- May 31, 2037
- Completion
- May 31, 2037
- Last update posted
- May 18, 2026
2014 – 2037
United States locations
- U.S. sites
- 1
- U.S. states
- 1
- U.S. cities
- 1
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Foundation Fighting Blindness | Columbia | Maryland | 21045 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT02435940, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted May 18, 2026 · Synced Sep 5, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT02435940 live on ClinicalTrials.gov.