This is a patient registry for people with rare inherited eye diseases that cause vision loss over time. You can participate by sharing your health information through a secure online portal at MyRetinaTracker.org. The registry helps researchers better understand these conditions and develop new treatments.
Key Objective:The registry creates a database of patient information that helps researchers identify new treatment options and understand the progression of inherited retinal diseases.
Who to Consider:People diagnosed with rare inherited retinal degenerative diseases should consider enrolling to contribute to research that may lead to new therapies.
Trial Parameters
Eligibility Fast-Check
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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