Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study

Launched by FRIEDREICH'S ATAXIA RESEARCH ALLIANCE · Aug 23, 2023

Keywords

ClinConnect Summary

The Friedreich Ataxia Global Clinical Consortium UNIFIED Natural History Study is a research project aimed at understanding the progression of Friedreich ataxia, a genetic condition that affects movement and coordination. This study is taking place in multiple locations around the world and is designed to gather important information that can help in developing new treatments for this condition. Researchers are looking for participants of all ages, both males and females, who have been genetically confirmed to have Friedreich ataxia.

If you or a loved one is interested in participating, you’ll need to provide written consent, and if the participant is a minor, a parent or legal guardian will need to sign as well. Participants can expect to take part in various assessments over time, helping researchers learn more about how the disease affects individuals. This study is currently recruiting participants, but some people may not be eligible if they have other serious health issues or cannot provide consent. Your involvement could play a crucial role in advancing our understanding and treatment of Friedreich ataxia.

Gender

ALL

Eligibility criteria

• Inclusion 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
• Exclusion Criteria:
• • 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.