Retinal Degeneration clinical trials at UCSF
2 in progress, 1 open to eligible people
Retinal degeneration is when the eye’s retina deteriorates over time. UCSF is involved in research studying the effects of rare gene mutations on retinal disorders. Scientists are collecting data internationally to examine how these mutations influence retinal health.
Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants
open to eligible people ages 4 years and up
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
San Francisco, California and other locations
Rate of Progression of PCDH15-Related Retinal Degeneration in Usher Syndrome 1F
Sorry, in progress, not accepting new patients
The overall goal of this project, co-funded by the Foundation Fighting Blindness and the USHER 1F Collaborative is to characterize the natural history of disease progression in patients with PCDH15 mutations in order to accelerate the development of outcome measures for clinical trials.
San Francisco, California and other locations
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