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Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants
NCT05589714 · View on ClinicalTrials.gov ↗
Study Summary
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
Conditions Studied
Study Locations (20)
California
- USC Roski Eye Institute — Los Angeles
- University of California San Francisco — San Francisco
Florida
- University of Florida Health Jacksonville — Jacksonville
- University of Miami, Bascom Palmer Eye Institute — Miami
Pennsylvania
- University of Pennsylvania, Scheie Eye Institute — Philadelphia
- UPMC Eye Center — Pittsburgh
Texas
- Retina Foundation of the Southwest — Dallas
- Baylor College of Medicine, Alkek Eye Center — Houston
Wisconsin
- University of Wisconsin Madison — Madison
- Medical College of Wisconsin Eye Institute — Milwaukee
Arkansas
- University of Arkansas, Jones Eye Institute — Little Rock
Georgia
- Emory University, Emory Eye Center — Atlanta
Maryland
- Johns Hopkins University, Wilmer Eye Institute — Baltimore
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 1,500 participants |
| Start Date | 2023-05-11 |
| Est. Completion | 2030-12-15 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT05589714
The ClinicalTrials.gov registry entry for NCT05589714 describes a study currently listed as recruiting. It is categorized as an unspecified phase, which is the standard way researchers label where a study sits along the investigational pathway from early safety work through later efficacy and post-marketing evaluation. The registered enrollment target is 1,500 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is Jaeb Center for Health Research, which has 134 total studies on file at ClinicalTrials.gov, and sponsors are the parties responsible for study design, oversight, and regulatory filings.
The record links to 2 conditions, with Retinitis Pigmentosa appearing as the primary indexed condition, and to 0 interventions. Interventions can include drugs, devices, procedures, behavioral programs, or observational arms, and each is tracked as a separate registry field so that downstream queries can filter accurately. When a trial lists multiple interventions, it usually reflects a multi-arm design or a comparison protocol rather than a single treatment being tested in isolation. The brief summary published in the registry is the clearest source of protocol intent and should be read before drawing conclusions from any sidebar tags.
Geographic footprint matters for practical reasons: NCT05589714 reports 20 study locations spanning 15 distinct geographic areas — top geographies include California, Florida, Pennsylvania. A larger site network tends to correlate with broader recruitment capacity, but it does not imply anything about study quality, and site-level enrollment status can diverge from the overall registry status shown above. Every data point on this page comes from the public ClinicalTrials.gov dataset and is reproduced here for reference only; it is not a medical recommendation, an endorsement of the sponsor, or an invitation to enroll. Verify current status, eligibility criteria, and contact details directly at ClinicalTrials.gov, and discuss any participation decision with your own healthcare provider.
Frequently Asked Questions
What is clinical trial NCT05589714 about?
NCT05589714 is a clinical study titled "Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants". 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, l...
What is the current status of trial NCT05589714?
This trial is currently recruiting. The enrollment target is 1,500 participants. The study started on 2023-05-11. Estimated completion is 2030-12-15.
What conditions does trial NCT05589714 study?
This clinical trial studies the following conditions: Retinitis Pigmentosa, Inherited Retinal Degeneration. These conditions were identified from the trial registry and reflect the primary focus areas of the research.
Who is sponsoring clinical trial NCT05589714?
This trial is sponsored by Jaeb Center for Health Research, which has 134 total clinical trials registered on ClinicalTrials.gov. The sponsor is responsible for the study's design, funding, and regulatory compliance.
Where is trial NCT05589714 being conducted?
This trial has 20 study locations across Arkansas, California, Florida, Georgia, Maryland. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.
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