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NCT04127006: Pro-EYS

Rate of Progression in EYS Related Retinal Degeneration

Active, enrolled Last updated 4 March 2026
What this trial tests

trial in Retinitis Pigmentosa in 103 participants. Participants enrolled and being followed up; not accepting new ones.

Timeline
25 February 2020
Primary endpoint
1 April 2026
1 April 2026

Quick facts

Lead sponsorJaeb Center for Health Research
StatusActive, enrolled
Study typeOBSERVATIONAL
Enrollment103
Start date25 February 2020
Primary completion1 April 2026
Estimated completion1 April 2026
Sites19 locations across France, Finland, Netherlands, Germany, Israel, Canada, United States

Conditions studied

Sponsor

Jaeb Center for Health Research — full company profile →

Who can join

18 and older, any sex, with Retinitis Pigmentosa or Eye Diseases. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

The overall goal of this project funded by the Foundation Fighting Blindness is to characterize the natural history of disease progression in patients with EYS mutations in order to accelerate the development of outcome measures for clinical trials.

Publications & conference data

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

  1. Implementation of a registry and open access genetic testing program for inherited retinal diseases within a non-profit foundation.
    Mansfield BC, Yerxa BR, Branham KH. · · 2020 · cited 27× · PMID 32783387 · DOI 10.1002/ajmg.c.31825
  2. Natural history of retinitis pigmentosa based on genotype, vitamin A/E supplementation, and an electroretinogram biomarker.
    Comander J, Weigel DiFranco C, Sanderson K, Place E, et al · · 2023 · cited 25× · PMID 37261916 · DOI 10.1172/jci.insight.167546
  3. The double-edged sword of inflammation in inherited retinal degenerations: Clinical and preclinical evidence for mechanistically and prognostically impactful but treatable complications.
    Sarici K, Vyas A, Iannaccone A. · · 2023 · cited 11× · PMID 37123408 · DOI 10.3389/fcell.2023.1177711
  4. Tackling the Challenges of Product Development Through a Collaborative Rare Disease Network: The Foundation Fighting Blindness Consortium.
    Durham TA, Duncan JL, Ayala AR, Birch DG, et al · · 2021 · cited 9× · PMID 34004001 · DOI 10.1167/tvst.10.4.23
  5. The Importance of Natural History Studies in Inherited Retinal Diseases.
    Ayala A, Cheetham J, Durham T, Maguire M. · · 2023 · cited 8× · PMID 36690461 · DOI 10.1101/cshperspect.a041297
  6. 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
  7. 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

Verify or expand the search:

Other recruiting trials for Retinitis Pigmentosa

Currently open trials in the same condition.

Other Jaeb Center for Health Research trials

Trials by the same sponsor.

Verify against primary sources

Data sources for this page

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/NCT04127006.

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