GLOBAL CLINICAL RESEARCH NETWORK

Friedreich’s Ataxia Global Clinical Consortium

FARA Europe was established to facilitate the creation of the new FA Global Clinical Consortium (FA GCC).

FA GCC has been established to harmonize the natural history ecosystem allowing for a more complete view of disease progression of FA. The FA GCC will enable collaborative global clinical research, accelerate development of new therapies, and improve outcomes for those living with FA.

The FA GCC is built on the coming together of two existing natural history studies:
FA-COMS, supported by FARA, conducted in the US, Canada, Australia, New Zealand and India and EFACTS, a natural history study conducted throughout Europe. These studies have been carried out in parallel for over a decade, with many similarities.

A single global natural history study protocol was developed by the FA GCC, called the UNIFAI Study. The UNIFAI Study will collect natural history data and improve the panel of outcome measures that can be used in FA clinical trials. For more information, please visit UNIFAI clinicaltrials.gov listing.

The FA GCC has combined the existing networks, leveraging current resources and staff. This new structure encourages balanced global interaction and collaboration.

The consortium is comprised of a funding board, committees, working groups, a patient advocacy/advisory team and the investigator members of each clinical site.

The map below highlights the initial countries participating in FA GCC: