🏛️ Verified NIH Record • Updated 2026-02-02
Rate of Progression of PCDH15-Related Retinal Degeneration in Usher Syndrome 1F (NCT04765345)
Rate of Progression of PCDH15-Related Retinal Degeneration in Usher
🔵 Active, Not Recruiting Interventional Protocol 📊 Observational Clinical Research Sponsor: Jaeb Center for Health Research
🩺 Plain-English Summary (8th-Grade Level)
The overall goal of this project, co-funded by the Foundation Fighting Blindness and the USHER 1F Collaborative is to characterize the natural history of disease progression in patients with PCDH15 mutations in order to accelerate the development of outcome measures for clinical trials.
Who can join: Review the eligibility criteria below.
Location: University of California, San Francisco — San Francisco, California
Age range: 8 Years
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (10 Sites)
- University of California, San Francisco — San Francisco, California
- The Johns Hopkins Wilmer Eye Institute — Baltimore, Maryland
- Duke University, Duke Eye Center — Durham, North Carolina
- Hospital for Sick Children — Toronto, Ontario
- CHNO des Quinze-Vingts — Paris,
- University of Tubingen — Tübingen,
- Haddassah Medical Center — Jerusalem,
- Radboud University — Nijmegen,
- University Hospital Basel — Basel,
- Moorfields Eye Hospital — London,
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Retinal Degeneration
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- SGLT2 Inhibitors in Geographic Atrophy — St Louis, Missouri
- Rod and Cone Mediated Function in Retinal Disease — Bethesda, Maryland
- Adaptive Optics Imaging of Outer Retinal Diseases — Bethesda, Maryland
Explore by condition: All Retinal Degeneration clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Review the official NIH record below to find the coordinating site.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.