NCT02435940 Inherited Retinal Degenerative Disease Registry
| NCT ID | NCT02435940 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Foundation Fighting Blindness |
| Condition | Eye Diseases Hereditary |
| Study Type | OBSERVATIONAL |
| Enrollment | 20,000 participants |
| Start Date | 2014-06 |
| Primary Completion | 2037-06 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 20,000 participants in total. It began in 2014-06 with a primary completion date of 2037-06.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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.
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
Contact & Investigator
Todd Durham, PhD
PRINCIPAL INVESTIGATOR
Senior Vice President, Clinical and Outcomes Research
Frequently Asked Questions
Who can join the NCT02435940 clinical trial?
This trial is open to participants of all sexes, studying Eye Diseases Hereditary. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT02435940 currently recruiting?
Yes, NCT02435940 is actively recruiting participants. Contact the research team at Coordinator@MyRetinaTracker.org for enrollment information.
Where is the NCT02435940 trial being conducted?
This trial is being conducted at Columbia, United States.
Who is sponsoring the NCT02435940 clinical trial?
NCT02435940 is sponsored by Foundation Fighting Blindness. The principal investigator is Todd Durham, PhD at Senior Vice President, Clinical and Outcomes Research. The trial plans to enroll 20,000 participants.