Your Role in Research

When you participate in a research study, you are volunteering to capture your experience with FA as data that can be analyzed. Clinical research can range from non-interventional studies that teach us more about FA in a person to interventional clinical trials that evaluate a new treatment approach.

Meet Shandra. In the video on the right, you can hear from a member of the FA community about the role she’s chosen to play in advancing FA research.

Girl participating in research


Three steps to get involved in clinical trials and research studies:


Join the FA Global Patient Registry

Join the FA Global Patient Registry to stay informed about new research opportunities and clinical trial updates.


Download the Clinical Trials 101 Guide

Download FARA’s Clinical Trials 101 guide to learn more about the drug development process and give yourself the tools for making an informed decision about clinical trial participation.


Explore FARA’s Clinical Trial Finder

Use the clinical trials finder tool to find an enrolling clinical trial or research study that is a match for you.

Understanding Clinical Trials

The clinical trial process is designed to evaluate the safety and efficacy of a potential treatment. The process is overseen by regulatory agencies (e.g. FDA and EMA). If treatments are proven to be both safe and effective in clinical trials, they may become available to the public.

FARA has educational resources and provides access to new information at research symposia and through webinars. To learn more about the clinical trial process, visit the Understanding Clinical Trials page. You can also learn about the latest FA research at Upcoming Education Events.


The Drug Development Pipeline

FARA believes in a cocktail approach – a combination of two or more treatments - in order to slow, stop, reverse, and cure FA.

Learn more about the different approaches aimed at treating FA and the potential treatments that are in the FA Drug Development Pipeline.

Drug Development Pipeline
drug development pipeline

FARA’s Clinical Research Initiatives

FARA has invested in initiatives that make a substantial difference in accelerating clinical trial readiness. These core clinical research initiatives have been vital in designing clinical trials and were paramount in providing data to support the first approved treatment for FA.

The FA Global Clinical Consortium

High-quality research is essential for advancing therapies in the FA Drug Development Pipeline. FARA has worked to establish over 30 clinical research centers around the globe to participate in trials.

UNIFAI Natural History Study

Understanding the natural course of FA disease progression is critical to research. FARA has collected natural history data since 2003 on over 2,500 individuals with FA.

Learn more about how to join the UNIFAI natural history study and contribute to this essential component of FA research.