๐Ÿ›๏ธ Verified NIH Record โ€ข Updated 2026-04-07

Natural History of PRPF31 Mutation-Associated Retinal Dystrophy (NCT05573984)

A Natural History and Outcome Measure Discovery Study of PRPF31 Mutation-Associated Retinal Dystrophy

๐Ÿ”ต Active, Not Recruiting Interventional Protocol ๐Ÿ“Š Observational Clinical Research Sponsor: PYC Therapeutics

๐Ÿฉบ Plain-English Summary (8th-Grade Level)

The purpose of this study is to characterize the natural history through temporal systemic evaluation of subjects identified with PRPF31 mutation-associated retinal dystrophy, also called retinitis pigmentosa type 11, or RP11. Assessments will be completed to measure and evaluate structural and functional visual changes including those impacting patient quality of life associated with this inherited retinal condition and observing how these changes evolve over time.

Who can join: Review the eligibility criteria below.

Location: University of California San Francisco โ€” San Francisco, California

Age range: 10 Years

๐Ÿ“‹ "Do I Qualify?" โ€” 1-Minute Self Screener

Instant Checklist

Full eligibility criteria are available on the official NIH protocol. View the criteria โ†—

๐Ÿ“ All Participating Trial Locations (7 Sites)

  • University of California San Francisco โ€” San Francisco, California
  • University of Florida Health โ€” Jacksonville, Florida
  • University of Michigan Kellogg Eye Center โ€” Ann Arbor, Michigan
  • Oregon Health and Science University - Casey Eye Institute โ€” Portland, Oregon
  • Retina Foundation of the Southwest โ€” Dallas, Texas
  • Lions Eye Institute โ€” Nedlands, Western Australia
  • Centre For Eye Research Australia (CERA) - Retinal Gene Therapy Unit โ€” East Melbourne,

๐Ÿ’ฐ 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 ยง 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.

๐Ÿ’ก How to Participate

  1. Check the checklist above to see if you may qualify.
  2. Review the official NIH record below to find the coordinating site.
  3. Ask about the visit schedule, what is covered at no cost, and any travel support.
  4. Confirm with your own doctor before making a decision.
๐Ÿ›๏ธ View Official NIH Record โ†—