The ability to accurately measure people’s brain degeneration may help researchers to find much needed biomarkers that are essential to understanding, diagnosing and ultimately treating ALS. Using advanced brain imaging techniques (magnetic resonance imaging, or MRI), this observational study will monitor over time the degree of change that occurs in the brains of people who are living with ALS. Each study participant will have 3 MRI scans over a period of 8 months, along with neurological and cognitive evaluations. This study is led Dr. Sanjay Kalra and will operate within the Canadian ALS Neuroimaging Consortium (CALSNIC), a cross-Canada imaging network funded by the largest-ever grant provided by the ALS Canada research program.
Biomarkers that can effectively measure neurodegeneration are much needed and essential to understanding, diagnosing, and ultimately treating ALS. In this observational study, researchers are seeking to identify and measure the levels of specific biomarkers in ALS patients being treated with edaravone (Radicava). The biomarkers of interest are linked to oxidative stress, inflammation, and neuronal and muscle injury. The study will enroll approximately 300 participants who will be followed over a 24-week period. Biological samples (blood and urine) will be collected from study participants for analyses. Participants can also opt in to receive their genetic results for five common mutations associated with ALS, including SOD1, TARDBP, C9ORF72, FUS and VCP.
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.
