Registry for inherited retinal degenerative diseases
Foundation Fighting Blindness My Retina Tracker Registry
Foundation Fighting Blindness · NCT02435940
This study is creating a registry for people with rare inherited eye diseases to help track their health and experiences over time, making it easier to understand these conditions and support research.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 20000 (estimated) |
| Sex | All |
| Sponsor | Foundation Fighting Blindness (other) |
| Locations | 1 site (Columbia, Maryland) |
| Trial ID | NCT02435940 on ClinicalTrials.gov |
What this trial studies
The My Retina Tracker Registry is an observational registry designed for individuals affected by rare inherited retinal degenerative diseases. Participants create a personal profile that captures their experiences, family history, genetic testing results, and health status, which they can update regularly. Clinicians can also add clinical measurements to the participants' profiles, allowing for a comprehensive longitudinal record of disease progression. The registry aims to enhance understanding of these diseases and facilitate research participation.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with an inherited retinal degenerative disease.
Not a fit: Patients with conditions such as glaucoma, diabetic retinopathy, or non-heritable retinal diseases will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could provide valuable insights into inherited retinal diseases, potentially leading to improved treatments and patient outcomes.
How similar studies have performed: Other registries for rare diseases have shown success in gathering valuable data and facilitating research, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * Diagnosed with an inherited retinal degenerative disease OR Exclusion Criteria: * Glaucoma only * Diabetic retinopathy only * Non-retinal disease * Not heritable retinal disease
Where this trial is running
Columbia, Maryland
- Foundation Fighting Blindness — Columbia, Maryland, United States (RECRUITING)
Study contacts
- Principal investigator: Todd Durham, PhD — Senior Vice President, Clinical and Outcomes Research
- Study coordinator: Registry Coordinator
- Email: Coordinator@MyRetinaTracker.org
- Phone: 800-683-5555
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Eye Diseases Hereditary, Retinal Disease, Achromatopsia, Bardet-Biedl Syndrome, Bassen-Kornzweig Syndrome, Batten Disease, Best Disease, Choroidal Dystrophy