Foundation Fighting Blindness My Retina Tracker Registry

Trial Information
Status: Recruiting
Location: See location...
Study Type: Observational [Patient Registry]

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 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.

Am I eligible for this trial?
Participation Requirements
Healthy Volunteers:
Accepts Healthy Volunteers

• Diagnosed with an inherited retinal degenerative disease OR

Where is this trial taking place?
United States
Foundation Fighting Blindness
Who do I contact about this trial?
Registry Coordinator
When is this trial taking place?
Start Date: June 2014
Estimated Completion Date: June 2037
How many participants will be in this trial?
Target number of participants: 20000
Who are the authors of this trial?
What other conditions are being studied in this trial?

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