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NCT05589714 · ClinicalTrials.gov registry record
Universal Rare Gene Study: A Registry and Natural History Study of Retinal Dystrophies Associated With Rare Disease-Causing Genetic Variants
A clinical trial of Retinitis Pigmentosa and Inherited Retinal Degeneration, sponsored by Jaeb Center for Health Research.
- Recruiting
- Registry status
- 1,500
- Enrollment target
- 20
- Study locations
NCT05589714: Recruiting study of Retinitis Pigmentosa and Inherited Retinal Degeneration, sponsored by Jaeb Center for Health Research.
NCT05589714 is a study of Retinitis Pigmentosa and Inherited Retinal Degeneration that is actively recruiting participants, run by Jaeb Center for Health Research. The registered enrollment target is 1,500 participants, above the 221-participant average among 37 other Retinitis Pigmentosa trials with a reported enrollment target (579% higher). The trial reports 20 study locations across 15 states. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT05589714, a study of Retinitis Pigmentosa and Inherited Retinal Degeneration, is actively recruiting participants, sponsored by Jaeb Center for Health Research.
- RECRUITING
- Registry status
- 1,500 participants
- Enrollment target
- 20
- Study locations
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
Primary Outcome
Measured by Static Perimetry (SP) using Octopus 900 Pro
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 |
What NCT05589714 shows while recruiting
NCT05589714 is an observational study that tracks outcomes without assigning an intervention. Its 1,500 participants enrollment target places it among the larger protocols in the corpus, above the 221-participant average among 37 other Retinitis Pigmentosa trials with a reported enrollment target (579% higher).
The record links to 2 conditions, with Retinitis Pigmentosa appearing as the primary indexed condition, and to 0 interventions.
NCT05589714 names 20 study sites across 15 states, led by California, Florida, Pennsylvania.
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.
Who is sponsoring clinical trial NCT05589714?
This trial is sponsored by Jaeb Center for Health Research, which has 119 total clinical trials registered on ClinicalTrials.gov.
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.
Learn More About Clinical Trials
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Where NCT05589714's enrollment target sits among peer trials
1,500 2nd of 37 the highest of 37 other Retinitis Pigmentosa trials
participants (enrollment target), bucketed by value
Each bar is a band; taller bars hold more other Retinitis Pigmentosa trials. The dashed line + filled bar mark this entry. Hover or tap any bar for its full count and share, and where it sits relative to this entry.
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