Developing a consortium for ALS clinical research: the Canadian ALS Research Network

Author(s): Lorne Zinman, Angela Genge,Denise A Figlewicz

Amyotrophic lateral sclerosis (ALS) is an incurable neurological disease characterized by progressive weakness resulting in death 2–5 years after symptom onset in most cases. Collaborative research initiatives have accelerated the search for effective treatments and are essential for the discovery process in a rare, terminal disease such as ALS. We describe the advantages of forming a disease specific network and chronicle the growth of the Canadian ALS Research Network. This includes forming infrastructure to perform clinical trials, building a program to conduct translational studies, partnering in epidemiological and imaging studies, and the development of quality of life and best practice guidelines. ALS research networks will continue to serve a pivotal role in improving the lives of patients with this devastating disease.