Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants
Public ClinicalTrials.gov record NCT05589714. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
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
Study identification
- NCT ID
- NCT05589714
- Recruitment status
- Recruiting
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 1,500 participants
Conditions and interventions
Interventions
Not listed
Eligibility (public fields only)
- Age range
- 4 Years and older
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- May 11, 2023 (Actual)
- Primary completion
- Dec 15, 2029 (Estimated)
- Completion
- Dec 15, 2030 (Estimated)
- Last update posted
- Oct 29, 2026
2023 – 2030
United States locations
- U.S. sites
- 19
- U.S. states
- 14
- U.S. cities
- 19
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| University of Arkansas, Jones Eye Institute | Little Rock | Arkansas | 72205 | Recruiting |
| USC Roski Eye Institute | Los Angeles | California | 90033 | Recruiting |
| University of California San Francisco | San Francisco | California | 94158 | Recruiting |
| University of Florida Health Jacksonville | Jacksonville | Florida | 32209 | Recruiting |
| University of Miami, Bascom Palmer Eye Institute | Miami | Florida | 33136 | Recruiting |
| Emory University, Emory Eye Center | Atlanta | Georgia | 30322 | Recruiting |
| Johns Hopkins University, Wilmer Eye Institute | Baltimore | Maryland | 21236 | Recruiting |
| Harvard Univ., Massachusetts Eye and Ear Infirmary | Boston | Massachusetts | 02114 | Recruiting |
| University of Michigan, Kellogg Eye Center | Ann Arbor | Michigan | 48105 | Recruiting |
| Mayo Clinic | Rochester | Minnesota | 55905 | Recruiting |
| Duke University, Duke Eye Center | Durham | North Carolina | 27705 | Recruiting |
| Oregon Health & Science Univ., Casey Eye Institute | Portland | Oregon | 97239 | Recruiting |
| University of Pennsylvania, Scheie Eye Institute | Philadelphia | Pennsylvania | 19104 | Recruiting |
| UPMC Eye Center | Pittsburgh | Pennsylvania | 15213 | Recruiting |
| Retina Foundation of the Southwest | Dallas | Texas | 75231 | Recruiting |
| Baylor College of Medicine, Alkek Eye Center | Houston | Texas | 77030 | Recruiting |
| University of Utah, John Moran Eye Center | Salt Lake City | Utah | 84132 | Recruiting |
| University of Wisconsin Madison | Madison | Wisconsin | 53711 | Recruiting |
| Medical College of Wisconsin Eye Institute | Milwaukee | Wisconsin | 53226 | Recruiting |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
Non-U.S. locations
This page focuses on the U.S. directory. The official record also lists 17 non-U.S. sites.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT05589714, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Oct 29, 2026 · Synced Nov 3, 2026
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Open the official record
The complete public registry record, listed eligibility criteria, and available contact information for NCT05589714 live on ClinicalTrials.gov.