Project Overview

Amyotrophic lateral sclerosis (ALS) is a terminal disease that paralyzes people because the brain is no longer able to communicate with the muscles that we are typically able to move at will. One of the challenges is that ALS is a very heterogeneous disease, meaning that each person’s disease is different. Not only is this variability in symptoms poorly understood, but it can make diagnosis very difficult and may explain why only few treatments, with modest benefits, are available today.

The Comprehensive Analysis Platform To Understand, Remedy and Eliminate ALS, or CAPTURE ALS, is a national platform that unites patients, researchers and physicians across Canada to study ALS. CAPTURE ALS will provide the systems and tools to collect, store, share and analyze large amounts of information about ALS.

Patients with ALS and healthy individuals will be invited to participate in CAPTURE ALS. These volunteers will undergo a full array of assessments that together will paint a detailed and global picture of their disease. Participants will be followed regularly to examine the progression of their disease. They will answer questions about their symptoms, undergo brain scans, cognitive and speech testing, and have blood, urine and spinal fluid collected.

The wealth of information collected by CAPTURE ALS will be securely shared with researchers across Canada and the world to help understand the causes of ALS, the variability that exists between patients, and help identify new treatments. Using advanced analysis methods, CAPTURE ALS will combine all these data to identify unique subtypes of ALS patients and provide tools for personalized medicine. This Canada-wide collaboration between researchers and patients will help to accelerate research and improve treatment for ALS on a global scale.

Principal Investigator

Sanjay Kalra , University of Alberta

Team Members

Nicolas Dupré, CRCHUQ-Enfant-Jesus, University Laval

Angela Genge, McGill University

Lorne Zinman, Sunnybrook Research Institute

Janice Robertson, University of Toronto

Christine Vande Velde, Université de Montréal

Ekaterina Rogaeva, University of Toronto

Tania Bubela, Simon Fraser University

Russell Greiner, University of Alberta

Wendy Johnston, University of Alberta

Partners and Donors

Alnylam Pharmaceuticals

ALS Canada