NCT05589714 (Uni-Rare) is a clinical trial in Inherited Retinal Degeneration, sponsored by Jaeb Center for Health Research.

Who is sponsoring NCT05589714?

NCT05589714 is sponsored by Jaeb Center for Health Research.

What condition does NCT05589714 study?

NCT05589714 studies Inherited Retinal Degeneration, Retinitis Pigmentosa.

Is NCT05589714 still recruiting?

NCT05589714 is currently recruiting now. Last updated 14 April 2026.

Last reviewed 2026-04-14 · How we verify

NCT05589714: Uni-Rare

Name: Drug Landscape Pharmaceutical Database
Creator: Drug Landscape
Published: 2026-01-01
License: https://creativecommons.org/licenses/by/4.0/

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

Recruiting now Last updated 14 April 2026

What this trial tests

trial in Inherited Retinal Degeneration in 1,500 participants. Currently enrolling.

Timeline

11 May 2023

Primary endpoint
15 December 2029

15 December 2030

Quick facts

Lead sponsor	Jaeb Center for Health Research
Status	Recruiting now
Study type	OBSERVATIONAL
Enrollment	1,500
Start date	11 May 2023
Primary completion	15 December 2029
Estimated completion	15 December 2030
Sites	36 locations across France, Italy, Finland, Netherlands, Belgium, United Kingdom, Israel, Mexico

Conditions studied

Inherited Retinal Degeneration — all drugs for Inherited Retinal Degeneration →
Retinitis Pigmentosa — all drugs for Retinitis Pigmentosa →

Sponsor

Jaeb Center for Health Research — full company profile →

Who can join

4 and older, any sex, with Inherited Retinal Degeneration or Retinitis Pigmentosa. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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

Publications & conference data

3 peer-reviewed publications reference this trial (live from Europe PMC):

Inherited Retinal Degenerations and Non-Neovascular Age-Related Macular Degeneration: Progress and Unmet Needs.
Duncan JL, Bowman A, Laster A, Gelfman C, et al · · 2024 · cited 5× · PMID 39688851 · DOI 10.1167/tvst.13.12.28
Addressing Challenges in Developing Treatments for Inherited Retinal Diseases: Recommendations From the Third Monaciano Symposium.
Thompson DA, Jayasundera KT, Alekseev O, Ali RR, et al · · 2025 · cited 2× · PMID 40862658 · DOI 10.1167/tvst.14.8.37
Report From the Second Global Scientific Conference on Clinical Trial Design and Outcome Measures for RDH12-Associated Inherited Retinal Degeneration.
Cerolini S, Bennett J, Leroy BP, Durham T, et al · · 2024 · PMID 39120885 · DOI 10.1167/tvst.13.8.17

Verify or expand the search:

Other recruiting trials for Inherited Retinal Degeneration

Currently open trials in the same condition.

NCT07266584 — Restoration of Central Vision With PRIMA in Patients With Photoreceptor Degeneration · NA · recruiting

Other Jaeb Center for Health Research trials

Trials by the same sponsor.

NCT07496515 — Omega-3 Supplementation vs Demodex vs Eyelid Cleanser for Pediatric Chalazia · Phase 2 · not yet recruiting
NCT07095894 — A RCT of Spectacles With Aspherical Lenslets or 0.05% Atropine for Myopia Control · Phase 3 · not yet recruiting
NCT06837181 — Studying the Presence of CFRD Complications With Thoughtful Recruitment (SPeCTRuM) · recruiting
NCT06880835 — Effect of Inhaled Technosphere Insulin vs RAA Insulin on Exercise-Induced Hypoglycemia in Adults With T1D Using Automate · NA · recruiting
NCT06957028 — CGM for the Early Detection and Management of Hyperglycemia in Pregnancy · NA · recruiting

Verify against primary sources

ClinicalTrials.gov — authoritative US registry record
WHO ICTRP — international registry index
EU Clinical Trials Register
Sponsor press releases (Google)

Data sources for this page

Trial protocol + status: ClinicalTrials.gov NCT05589714 (US National Library of Medicine, public domain)
Publications: Europe PMC API search by NCT ID, retrieved 10 June 2026
Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
Sponsor: as reported to ClinicalTrials.gov by Jaeb Center for Health Research
Last refreshed: 14 April 2026

Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT05589714.

Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing