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.

Ibudilast (also referred to as MN-166) is an experimental therapy being developed to treat ALS. This broad target drug is thought to reduce the activity of immune cells in the brain, thereby supressing inflammation. It is also believed to promote the production of neurotrophic factors which play a role in the growth and survival of motor neurons. The Phase 2b/3 COMBAT-ALS clinical trial will enroll 230 participants living with ALS and last 12 months. Researchers will monitor participants to ensure that the drug is safe. Researchers will also evaluate the impact of ibudilast on the progression of ALS by evaluating changes in the ALS Functional Rating Scale-Revised (ALSFRS-R) score, as well as muscle strength, quality of life, and respiratory function. Ibudilast will be taken by mouth in combination with a dose of riluzole. Researchers believe the anti-inflammatory and neuroprotective characteristics of ibudilast make it a promising treatment option for ALS.

To learn more, please click here to view a webinar hosted by the study sponsor, MediciNova.

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.