Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study
Recruiting now
Conditions studied: Friedreich Ataxia
In brief
This project is a global, multicenter, prospective, longitudinal, observational natural history study that can be used to understand the disease progression and support the development of safe and effective drugs and biological products for Friedreich ataxia.
Key facts
- Study ID
- NCT06016946
- Run by
- Friedreich's Ataxia Research Alliance
- People needed
- 3000
- Starts
- 2023-06-28
- Expected to finish
- 2048-01-28
- Last updated by the study team
- 2025-06-17
Who can join
Age: any. Sex: any. Healthy volunteers: accepted.
You may qualify if…
- Both males and females of any age
- Individuals with Friedreich ataxia (FA): Participants that meet genetically confirmed diagnosis of Friedreich ataxia
- Written informed consent provided
- Informed consent must be obtained for all participants
- For underage participants, they and the parent/ legally authorized representative have to sign the informed consent form, child assent (if applicable)
- Persons who are not legally competent require the informed consent of their legally authorized representative
You may not qualify if…
- Unable or unwilling to provide informed consent
- Acute or ongoing medical or other conditions that would interfere with the conduct and assessments of the study
- For any reason in the opinion of the investigator, participant would be unlikely or unable to comply with study protocol requirements.
Where it is running
- UCLA Ataxia Center — Los Angeles, California, United States (enrolling)
- University of Colorado — Denver, Colorado, United States (enrolling)
- University of Florida - Neurology — Gainesville, Florida, United States (enrolling)
- USF Ataxia Research Center — Tampa, Florida, United States (enrolling)
- Emory University Hospital - Neurology — Atlanta, Georgia, United States (enrolling)
- University of Iowa, Stead Family Children's Hospital — Iowa City, Iowa, United States (enrolling)
- Ohio State University - Neurology — Columbus, Ohio, United States (enrolling)
- Children's Hospital of Philadelphia — Philadelphia, Pennsylvania, United States (enrolling)
- St. Jude Children's Research Hospital — Memphis, Tennessee, United States (enrolling)
- Murdoch Childrens Research Institute — Parkville, Victoria, Australia (enrolling)
- Medical University Innsbruck, Department of Neurology — Innsbruck, Austria (enrolling)
- Université Libre de Bruxelles, Hôpital Erasme, Dpt of Neurology — Brussels, Belgium (enrolling)
- National and Kapodistrian University of Athens, Neurogenetics Unit — Athens, Greece (enrolling)
- All India Institute of Medical Sciences (AIIMS) — New Delhi, National Capital Territory of Delhi, India (enrolling)
- Tallaght University Hospital, Department of Neurology — Dublin, Ireland (enrolling)
- Referente Clinico-Scientifico di Polo IRCCS "E. Medea" — Conegliano, Italy (enrolling)
- Fondazione IRCCS Istituto Neurologico Carlo Besta — Milan, Italy (enrolling)
- Stichting Radboud Universitair Medisch Centrum — Nijmegen, Netherlands (enrolling)
- Auckland City Hospital — Auckland, New Zealand (enrolling)
- The Hospital for Sick Children — Toronto, Ontario, Canada (enrolling)
- CHUM - Hopital Notre-Dame — Montreal, Quebec, Canada (enrolling)
- McGill University Health Centre - Montreal Neurological Institute — Montreal, Quebec, Canada (enrolling)
- Motol University Hospital, Centre for Hereditary Ataxias — Prague, Czechia (enrolling)
- Paris Brain Institute — Paris, France (enrolling)
- University Hospital Aachen, Dept. of Neurology — Aachen, Germany (enrolling)
Full record on ClinicalTrials.gov
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