The EFACTS registry (European Friedreich’s Ataxia Consortium for Translational Studies) collects clinical information from people with Friedreich’s ataxia (FA) across Europe, including at the London Ataxia Centre. Ataxia UK provided some initial funding to EFACTS, and our Scientific Advisor Prof Barry Hunt is on the Steering Committee as a patient representative.
The Critical Path Institute (C-Path) and EFACTS have announced a data sharing agreement, to incorporate EFACTS patient data into C-Path’s Rare Disease Platform (called RDCA-DAP). This partnership makes RDCA-CAP the largest worldwide database for FA – a very powerful tool for researchers working towards treatments and cures for FA.
See the full press release here.