RecruitingNCT06016946

Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

Sponsor

Friedreich's Ataxia Research Alliance

Enrollment

3,000 participants

Start Date

Jun 28, 2023

Study Type

OBSERVATIONAL

Conditions

Friedreich Ataxia

Summary

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.

Eligibility

Inclusion Criteria6

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

Exclusion Criteria3

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.

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Locations(34)

UCLA Ataxia Center

Los Angeles, California, United States

University of Colorado

Denver, Colorado, United States

University of Florida - Neurology

Gainesville, Florida, United States

USF Ataxia Research Center

Tampa, Florida, United States

Emory University Hospital - Neurology

Atlanta, Georgia, United States

University of Iowa, Stead Family Children's Hospital

Iowa City, Iowa, United States

Ohio State University - Neurology

Columbus, Ohio, United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

St. Jude Children's Research Hospital

Memphis, Tennessee, United States

Murdoch Childrens Research Institute

Parkville, Victoria, Australia

Medical University Innsbruck, Department of Neurology

Innsbruck, Austria

Université Libre de Bruxelles, Hôpital Erasme, Dpt of Neurology

Brussels, Belgium

University of Campinas

Campinas, Brazil

The Hospital for Sick Children

Toronto, Ontario, Canada

CHUM - Hopital Notre-Dame

Montreal, Quebec, Canada

McGill University Health Centre - Montreal Neurological Institute

Montreal, Quebec, Canada

Motol University Hospital, Centre for Hereditary Ataxias

Prague, Czechia

Paris Brain Institute

Paris, France

Hôpital de Hautepierre, Service de Neurologie

Strasbourg, France

University Hospital Aachen, Dept. of Neurology

Aachen, Germany

Deutsches Zentrum Für Neurodegenerative Erkrankungen

Bonn, Germany

University of Munich, Dept. of Neurology, Friedrich-Baur-Institut

Munich, Germany

University of Tübingen, Dept. of Neurodegenerative Diseases, Hertie-Institute for Clinical Brain Research

Tübingen, Germany

National and Kapodistrian University of Athens, Neurogenetics Unit

Athens, Greece

All India Institute of Medical Sciences (AIIMS)

New Delhi, National Capital Territory of Delhi, India

Tallaght University Hospital, Department of Neurology

Dublin, Ireland

Referente Clinico-Scientifico di Polo IRCCS "E. Medea"

Conegliano, Italy

Fondazione IRCCS Istituto Neurologico Carlo Besta

Milan, Italy

Bambino Gesù Children's Hospital, Department of Neurosciences

Roma, Italy

Stichting Radboud Universitair Medisch Centrum

Nijmegen, Netherlands

Auckland City Hospital

Auckland, New Zealand

Hospital Sant Joan de Déu, Servicio de Neurología

Barcelona, Spain

Hospital Universitario La Paz, Servicio de Neurologia

Madrid, Spain

University College of London, Ataxia Centre, National Hospital for Neurology and Neurosurgery

London, United Kingdom

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NCT06016946

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