๐Ÿ›๏ธ Verified NIH Record โ€ข Updated 2024-10-02

FA Clinical Outcome Measures (NCT03090789)

Clinical Outcome Measures in Friedreich's Ataxia

๐Ÿ”ต Active, Not Recruiting Interventional Protocol ๐Ÿ“Š Observational Clinical Research Sponsor: Friedreich's Ataxia Research Alliance

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

This multicenter natural history study aims to expand the network of clinical research centers in FA, and to provide a framework for facilitating therapeutic interventions. In addition, this study will lead to the development of valid yet sensitive clinical measures crucial to outcome assessment of patients with Friedreich's Ataxia. This study will support genetic modifier studies, biomarker studies, and frataxin protein level assessments by building a sample repository. This natural history study is no longer recruiting under this protocol NCT03090789 but remains actively recruiting under the harmonized study (UNIFAI) NCT06016946.

Who can join: Review the eligibility criteria below.

Location: UCLA Ataxia Center โ€” Los Angeles, California

Age range: 4 Years to 80 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 (14 Sites)

  • UCLA Ataxia Center โ€” Los Angeles, California
  • University of Colorado โ€” Denver, Colorado
  • University of Florida - Neurology โ€” Gainesville, Florida
  • USF Ataxia Research Center โ€” Tampa, Florida
  • Emory University Hospital - Neurology โ€” Atlanta, Georgia
  • University of Iowa, Stead Family Children's Hospital โ€” Iowa City, Iowa
  • Ohio State University - Neurology โ€” Columbus, Ohio
  • Children's Hospital of Philadelphia - Neurology โ€” Philadelphia, Pennsylvania
  • St. Jude Children's Research Hospital โ€” Memphis, Tennessee
  • Murdoch Childrens Research Institute โ€” Parkville, Victoria
  • The Hospital for Sick Children โ€” Toronto, Ontario
  • CHUM - Hopital Notre-Dame โ€” Montreal, Quebec
  • All India Institute of Medical Sciences (Aiims) โ€” New Delhi,
  • Auckland City Hospital โ€” Auckland,

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†—