Retinitis Pigmentosa Clinical Trial
— MRTROfficial title:
Foundation Fighting Blindness My Retina Tracker Registry
NCT number | NCT02435940 |
Other study ID # | FFB-Registry-01 |
Secondary ID | |
Status | Recruiting |
Phase | |
First received | |
Last updated | |
Start date | June 2014 |
Est. completion date | June 2037 |
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.
Status | Recruiting |
Enrollment | 20000 |
Est. completion date | June 2037 |
Est. primary completion date | June 2037 |
Accepts healthy volunteers | Accepts Healthy Volunteers |
Gender | All |
Age group | N/A and older |
Eligibility | Inclusion Criteria: - Diagnosed with an inherited retinal degenerative disease OR Exclusion Criteria: - Glaucoma only - Diabetic retinopathy only - Non-retinal disease - Not heritable retinal disease |
Country | Name | City | State |
---|---|---|---|
United States | Foundation Fighting Blindness | Columbia | Maryland |
Lead Sponsor | Collaborator |
---|---|
Foundation Fighting Blindness |
United States,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Number of Participants with Rare Diagnoses Within the Inherited Retinal Degenerative Disease Category as Defined by Clinical Evaluation | Participant profiles broken out be disease category and genetic diagnosis | Data collection is ongoing, up to 20 years. |
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