Condition: Inherited Retinal Degeneration · Retinitis Pigmentosa · Sponsor: Jaeb Center for Health Research
This is an international, multicenter study with two components: Registry * A standardized genetic screening and a prospective, standardized, cross-sectional clinical data collection * Enrollment is open to all genes on the RD Rare Gene List Natural History Study * A prospective, standardized, longitudinal Natural History Study * Enrollment opens gene-by-gene, based on funding and within-gene Registry enrollment The study objectives are as follows. Registry Objectives 1. Genotype Characterization 2. Cross-Sectional Phenotype Characterization (within gene) 3. Establish a Link to My Retina Tracker Registry (MRTR) 4. Ancillary Exploratory Studies - Pooling of Genes Natural History Study Objectives 1. Natural History (within gene) 2. Structure-Function Relationship (within gene) 3. Risk Factors for Progression (within gene) 4. Ancillary Exploratory Studies - Pooling of Genes
This description comes directly from the study's public registry record.
Coordinating Center · 813-975-8690 · ffb@jaeb.org
Always discuss trial participation with your own doctor first.
| University of Arkansas, Jones Eye Institute | Little Rock, Arkansas, United States | Recruiting |
| USC Roski Eye Institute | Los Angeles, California, United States | Not Yet Recruiting |
| University of California San Francisco | San Francisco, California, United States | Recruiting |
| University of Florida Health Jacksonville | Jacksonville, Florida, United States | Recruiting |
| University of Miami, Bascom Palmer Eye Institute | Miami, Florida, United States | Recruiting |
| Emory University, Emory Eye Center | Atlanta, Georgia, United States | Recruiting |
| Johns Hopkins University, Wilmer Eye Institute | Baltimore, Maryland, United States | Recruiting |
| Harvard Univ., Massachusetts Eye and Ear Infirmary | Boston, Massachusetts, United States | Recruiting |
| University of Michigan, Kellogg Eye Center | Ann Arbor, Michigan, United States | Recruiting |
| Mayo Clinic | Rochester, Minnesota, United States | Recruiting |
| Duke University, Duke Eye Center | Durham, North Carolina, United States | Recruiting |
| Oregon Health & Science Univ., Casey Eye Institute | Portland, Oregon, United States | Recruiting |
+ 24 more locations — full list on the registry record.
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Source record: clinicaltrials.gov/study/NCT05589714