Outcome Measures for Friedreich's Ataxia
(FA-COMS Trial)
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial focuses on understanding Friedreich's Ataxia (FA), a rare genetic disorder affecting movement and coordination. The goal is to gather data and develop better methods to measure FA progression, aiding future treatment development. The study collects samples to support further research into genetic factors and potential biomarkers. Individuals with a confirmed FA diagnosis or those undergoing genetic testing would be suitable for this study. Participants should not have severe heart conditions, such as congestive heart failure. As an unphased trial, this study allows participants to contribute to foundational research that could lead to future breakthroughs in FA treatment.
Do I need to stop my current medications for this trial?
The trial information does not specify whether you need to stop taking your current medications. It's best to discuss this with the trial coordinators or your doctor.
Why are researchers excited about this trial?
Researchers are excited about the FA Clinical Outcome Measures trial because it aims to develop new ways to evaluate Friedreich's Ataxia (FA), a rare genetic disease. Unlike existing treatments that focus primarily on managing symptoms, this trial is focused on identifying better measures of disease progression. By doing so, it could pave the way for more effective future therapies and improve how we track the effectiveness of new treatments. This approach is crucial because accurately understanding disease progression is key to developing targeted and timely interventions for patients with FA.
Who Is on the Research Team?
David Lynch, MD PhD
Principal Investigator
Children's Hospital of Philadelphia
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Baseline Assessment
Initial collection of clinical measures and quality of life assessments
Annual Assessment
Yearly assessments of clinical measures, quality of life, and optional sample collection
Follow-up
Participants are monitored for safety and effectiveness after the main study period
What Are the Treatments Tested in This Trial?
Interventions
- None
Find a Clinic Near You
Who Is Running the Clinical Trial?
Friedreich's Ataxia Research Alliance
Lead Sponsor
University of Rochester
Collaborator
Children's Hospital of Philadelphia
Collaborator
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