🏛️ Verified NIH Record • Updated 2026-04-23

BONAPH1DE, A Prospective Observational Study of Patients With Primary Hyperoxaluria Type 1 (PH1) (NCT04982393)

🔵 Active, Not Recruiting Interventional Protocol 📊 Observational Clinical Research Sponsor: Alnylam Pharmaceuticals

🩺 Plain-English Summary (8th-Grade Level)

The purpose of this study is to describe the natural history and progression of patients diagnosed with PH1, and to characterize the long-term real-world safety and effectiveness of lumasiran.

Who can join: Review the eligibility criteria below.

Location: Clinical Trial Site — Phoenix, Arizona

📋 "Do I Qualify?" — 1-Minute Self Screener

Instant Checklist

Full eligibility criteria are available on the official NIH protocol. View the criteria ↗

📍 All Participating Trial Locations (30 Sites)

Showing the first 25 of 30 sites.

  • Clinical Trial Site — Phoenix, Arizona
  • Clinical Trial Site — Washington D.C., District of Columbia
  • Clinical Trial Site — Boston, Massachusetts
  • Clinical Trial Site — Rochester, Minnesota
  • Clinical Trial Site — Cincinnati, Ohio
  • Clinical Trial Site — Pittsburgh, Pennsylvania
  • Clinical Trial Site — Dallas, Texas
  • Clinical Trial Site — Houston, Texas
  • Clinical Trial Site — Ghent,
  • Clinical Trial Site — Liège,
  • Clinical Trial Site — Hamilton, Ontario
  • Clinical Trial Site — Toronto, Ontario
  • Clinical Trial Site — Laurier, Quebec
  • Clinical Trial Site — Bordeaux,
  • Clinical Trial Site — Lyon,
  • Clinical Trial Site — Paris,
  • Clinical Trial Site — Berlin,
  • Clinical Trial Site — Cologne,
  • Clinical Trial Site — Hamburg,
  • Clinical Trial Site — Jerusalem,
  • Clinical Trial Site — Orbassano, Torino
  • Clinical Trial Site — Milan,
  • Clinical Trial Site — Verona,
  • Clinical Trial Site — Amsterdam,
  • Clinical Trial Site — Santa Cruz de Tenerife, Canary Islands

💰 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 Primary Hyperoxaluria Type 1

💡 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.
🏛️ View Official NIH Record ↗