Inherited Retinal Degenerative Disease Registry
Launched by FOUNDATION FIGHTING BLINDNESS · May 1, 2015
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
The Inherited Retinal Degenerative Disease Registry, known as the My Retina Tracker® Registry, is a study designed for individuals affected by certain rare eye diseases that can lead to vision loss. This online registry allows participants to create a personal profile to share their experiences with their eye condition, including details about their family history, any genetic testing results, and their overall health. By signing up, participants can help researchers learn more about these diseases and their effects, which could ultimately lead to better treatments and clinical trials.
To be eligible for this study, participants must have a diagnosed inherited retinal degenerative disease. Unfortunately, those with only glaucoma, diabetic retinopathy, or non-hereditary retinal diseases are not eligible. Once enrolled, participants are encouraged to update their information regularly, which helps build a comprehensive picture of their disease over time. This valuable data will not only enhance understanding of these conditions but also assist scientists in their research efforts.
Gender
ALL
Eligibility 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
About Foundation Fighting Blindness
Foundation Fighting Blindness (FFB) is a leading nonprofit organization dedicated to advancing research and finding treatments for retinal diseases, including conditions that lead to vision loss and blindness. Through strategic funding of innovative scientific studies and clinical trials, FFB aims to accelerate the development of therapies that restore sight and improve quality of life for those affected by retinal degenerative diseases. The foundation is committed to fostering collaboration among researchers, clinicians, and patients, while also raising awareness and advocating for the needs of the visually impaired community.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Columbia, Maryland, United States
Patients applied
Trial Officials
Todd Durham, PhD
Principal Investigator
Senior Vice President, Clinical and Outcomes Research
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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