Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants

ClinicalTrials.gov ID: NCT05589714

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.

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ClinicalTrials.gov public records Last synced May 21, 2026, 2:23 AM EDT

Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.

Study identification

NCT ID: NCT05589714
Recruitment status: Recruiting
Study type: Observational
Phase: Not listed
Lead sponsor: Jaeb Center for Health Research; Other
Enrollment: 1,500 participants

Conditions and interventions

Conditions

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 10, 2023
Primary completion: Dec 14, 2029
Completion: Dec 14, 2030
Last update posted: Apr 13, 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	Not yet 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 Apr 13, 2026 · Synced May 21, 2026

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The complete protocol, eligibility criteria, and contact information for NCT05589714 live on ClinicalTrials.gov.

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