๐Ÿ›๏ธ Verified NIH Record โ€ข Updated 2024-11-15

Spinraza in Adult Spinal Muscular Atrophy (NCT03709784)

A Prospective, Multi-center, Observational Study of the Safety, Tolerability and Effectiveness of SPINRAZAยฎ (Nusinersen) in Adult Patients With Spinal Muscular Atrophy

๐Ÿ”ต Active, Not Recruiting Interventional Protocol ๐Ÿ“Š Observational Clinical Research Sponsor: Washington University School of Medicine

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

This is a longitudinal, observational study of adult patients with genetically confirmed chromosome 5q SMA to examine the safety, tolerability, and effectiveness of SPINRAZAยฎ (nusinersen) for up to 30 months.

Who can join: Review the eligibility criteria below.

Location: Barrow Neurological Institute โ€” Phoenix, Arizona

Age range: 18 Years to 70 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 (11 Sites)

  • Barrow Neurological Institute โ€” Phoenix, Arizona
  • Georgetown University โ€” Washington D.C., District of Columbia
  • Johns Hopkins โ€” Baltimore, Maryland
  • Massachusetts General Hospital-Harvard University โ€” Boston, Massachusetts
  • Memorial Healthcare โ€” Owosso, Michigan
  • Washington University School of Medicine โ€” St Louis, Missouri
  • New York University School of Medicine โ€” New York, New York
  • Houston Methodist Neurological Institute โ€” Houston, Texas
  • Children's Hospital of the King's Daughthers โ€” Norfolk, Virginia
  • University of Washington โ€” Seattle, Washington
  • Montreal Neurological Institute and Hospital โ€” Montreal, Quebec

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†—