Friedreich Ataxia Collaborative Clinical Research Network and Natural History Research Project

We want  to inform you that Dr. Antoine Duquette, a neurologist at the CHUM, and his research team will now be responsible for a site in Montreal that integrates the Collaborative Research Network in Friedreich Ataxia (CCRN in FA) in collaboration with FARA (Friedreich ‘s ataxia research Alliance) and Ataxie Canada – Claude St – jean Foundation.

This international network of now 13 research centers work together to advance the treatment and clinical care of people with Friedreich Ataxia (AF)

The main objectives of the network:

• Identify and validate clinical outcome measures and biomarkers in FA required for clinical trials
• Facilitate the implementation and delivery of clinical trials
• Sharing of data and resources to advance FA treatments
• Define best clinical practices for FA and provide the highest level of clinical care to patients
• In each clinical research center, a team of researchers, doctors and healthcare providers are dedicated to the FA.

The research team is seeking the participation of patients diagnosed with Freidreich’s ataxia. At   each site, the researchers carry out natural history measurement studies. These are studies that document clinical symptoms and progression of FA. To participate, you can notify the research team of your interest in the project.

This research project is approved by the CHUM’s Research Ethics Board. Your participation is voluntary and confidential. To indicate your interest in participating in the project, please contact Danny Tremblay, student in charge of the project, at danny.tremblay.1@umontreal.ca or with Antoine Duquette at antoine.duquette@umontreal.ca

We thank you for your interest in this project and hope you will participate in large numbers.