Understanding why ALS is different in each person – or the clinical variability– is vital in effectively treating the disease. CAPTURE ALS, a Canadian platform conceived to unite patients, physicians, and researchers to study ALS, will provide the systems and tools necessary to collect, store, and analyze vast amounts of information about ALS, allowing researchers to create the most comprehensive biological picture of people living with ALS to date.
The protocol involves four study visits at 0, 4, 8 and 12 months. At each visit a complete neurological exam, ALSFRS-R score, cognitive panel, speech analysis and neuroimaging scan will be performed. Blood will also be collected with the option to donate cerebrospinal fluid (CSF) as well. The comprehensive data set collected through the CAPTURE ALS platform will aid in the global effort to identify unique subtypes of ALS, enhance the development of both diagnostic and prognostic biomarkers, and inform personalized medicine strategies for the future.
The launch of CAPTURE ALS was made possible through the financial support of Brain Canada through the Canada Brain Research Fund (CBRF), and of ALS Canada, Alnylam Pharmaceuticals and Regeneron. The Calgary Flames Foundation also donated an additional $240K in December 2021 to support an additional 20 people living with ALS to participate.
For more information, please visit the CAPTURE ALS website.