Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

Description

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.

Conditions

Friedreich Ataxia

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Study Overview

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Study Details

Study overview

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.

Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

Condition
Friedreich Ataxia
Intervention / Treatment

-

Contacts and Locations

Los Angeles

UCLA Ataxia Center, Los Angeles, California, United States, 90095

Denver

University of Colorado, Denver, Colorado, United States, 80045

Gainesville

University of Florida - Neurology, Gainesville, Florida, United States, 32610

Tampa

USF Ataxia Research Center, Tampa, Florida, United States, 33612

Atlanta

Emory University Hospital - Neurology, Atlanta, Georgia, United States, 30329

Iowa City

University of Iowa, Stead Family Children's Hospital, Iowa City, Iowa, United States, 52242

Columbus

Ohio State University - Neurology, Columbus, Ohio, United States, 43221

Philadelphia

Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, United States, 19104

Memphis

St. Jude Children's Research Hospital, Memphis, Tennessee, United States, 38105

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • 1. Both males and females of any age
  • 2. Individuals with Friedreich ataxia (FA): Participants that meet genetically confirmed diagnosis of Friedreich ataxia
  • 3. Written informed consent provided
  • 1. Informed consent must be obtained for all participants
  • 2. For underage participants, they and the parent/ legally authorized representative have to sign the informed consent form, child assent (if applicable)
  • 3. Persons who are not legally competent require the informed consent of their legally authorized representative
  • 4. Unable or unwilling to provide informed consent
  • 5. Acute or ongoing medical or other conditions that would interfere with the conduct and assessments of the study
  • 6. For any reason in the opinion of the investigator, participant would be unlikely or unable to comply with study protocol requirements.

Ages Eligible for Study

to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Friedreich's Ataxia Research Alliance,

David Lynch, MD, PRINCIPAL_INVESTIGATOR, Children's Hospital of Philadelphia

Jorg B Schulz, Prof, PRINCIPAL_INVESTIGATOR, University Hospital, Aachen

Study Record Dates

2048-01-28