Friedreich’s Ataxia Research Alliance entrusts Mapi Research Trust with the management of their COAs

Mapi Research Trust’s catalog of Clinical Outcome Assessments now includes 5 new questionnaires developed for Friedreich’s ataxia (FA), a rare genetic and progressive neuromuscular disease. FA is life-shortening and affects an estimated 15,000 individuals worldwide.

The Friedreich’s Ataxia Research Alliance (FARA) is an American public and non-profit organization founded in 1998. FARA’s mission is to marshal and focus global resources and relationships needed to cure Friedreich’s ataxia by raising funds for research, promoting public awareness, and aligning scientists, patients, clinicians, government agencies, pharmaceutical companies and other organizations dedicated to curing FA and related diseases.

FARA has worked with the Friedreich’s ataxia community through the years to help develop clinical outcome assessments for use in clinical trials. These COAs were originally validated as part of the FA Clinical Outcome Measure Study (FACOMS):

• Friedreich’s Ataxia-Activities of Daily Living (FA-ADL)
• Friedreich's Ataxia Functional Disability Staging (FA-FDS)
• Friedreich's Ataxia Rating Scale (FARS)
• Modified Friedreich's Ataxia Rating Scale (mFARS)
• Modified Friedreich's Ataxia Rating Scale Upright Stability Scale (mFARS-USS)

“FARA is proud to collaborate with Mapi Research Trust to make Friedreich ataxia clinical outcome assessments available to the broader research community.” said Jennifer Farmer, CEO of Friedreich’s Ataxia Research Alliance. “We believe it’s vital not only to fund and support the development of research tools like COAs—which help accelerate the testing and evaluation of potential treatments—but also to ensure these resources are widely accessible. This partnership reflects FARA’s ongoing commitment to empowering researchers with the tools they need to advance therapeutic progress for Friedreich ataxia.”

“Since its creation, Mapi Research Trust has been actively engaged in several initiatives aimed at improving research into rare diseases. This is one of the reasons why we are particularly proud to start this important collaboration with FARA and their fight against Friedreich’s ataxia”, said Frédérique Boucher, Account Executive at Mapi Research Trust.

Please visit ePROVIDE to find out about conditions of use, review copies, list of available language versions and scientific information on the FA-ADL, the FARS and the mFARS.