πŸ›οΈ Verified NIH Record β€’ Updated 2026-04-23

ELEVATE, a Registry of Patients With Acute Hepatic Porphyria (AHP) (NCT04883905)

ELEVATE, a Global Observational Longitudinal Prospective Registry of Patients With Acute Hepatic Porphyria (AHP)

🟒 Recruiting Interventional Protocol πŸ“Š Observational Clinical Research Sponsor: Alnylam Pharmaceuticals

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

This global patient registry is being conducted to characterize the natural history and real-world clinical management of patients with AHP, and to further characterize the real-world safety and effectiveness of givosiran and other approved AHP therapies.

Who can join: Review the eligibility criteria below.

Location: Clinical Trial Site β€” Birmingham, Alabama

Age range: 12 Years

πŸ“‹ "Do I Qualify?" β€” 1-Minute Self Screener

Instant Checklist

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

πŸ“ All Participating Trial Locations (30 Sites)

Showing the first 25 of 30 sites.

  • Clinical Trial Site β€” Birmingham, Alabama
  • Clinical Trial Site β€” Gilbert, Arizona
  • Clinical Trial Site β€” San Francisco, California
  • Clinical Trial Site β€” Baltimore, Maryland
  • Clinical Trial Site β€” Boston, Massachusetts
  • Clinical Trial Site β€” Minneapolis, Minnesota
  • Clinical Trial Site β€” New York, New York
  • Clinical Trial Site β€” Winston-Salem, North Carolina
  • Clinical Trial Site β€” Oklahoma City, Oklahoma
  • Clinical Trial Site β€” Philadelphia, Pennsylvania
  • Clinical Trial Site β€” Galveston, Texas
  • Clinical Trial Site β€” Salt Lake City, Utah
  • Clinical Trial Site β€” Seattle, Washington
  • Clinical Trial Site β€” Brussels,
  • Clinical Trial Site β€” Leuven,
  • Clinical Trial Site β€” Bordeaux,
  • Clinical Trial Site β€” Paris,
  • Clinical Trial Site β€” Toulouse,
  • Clinical Trial Site β€” Berlin,
  • Clinical Trial Site β€” Chemnitz,
  • Clinical Trial Site β€” WΓΌrzburg,
  • Clinical Trial Site β€” Milan,
  • Clinical Trial Site β€” Modena,
  • Clinical Trial Site β€” Madrid,
  • Clinical Trial Site β€” Stockholm,

πŸ’° 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 Β§ 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.

πŸ’‘ 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.
πŸ›οΈ View Official NIH Record β†—