Access for All in ALS (ALL ALS) East Clinical Coordinating Center

Modified Project Summary/Abstract Section

To address existing challenges in Amyotrophic Lateral Sclerosis (ALS) research, we propose creation of a new national Amyotrophic Lateral Sclerosis (ALS)clinical research consortium, the Access for All in ALS (ALL ALS) Consortium. This new ALL ALS Consortium will operationalize recommendations of the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) Public Private Partnership (PPP) to hasten drug development for ALS.

The ALL ALS Program will have two coordinating centers (the ALL ALS East Coordinating Center and the ALL ALS West Coordinating Center) which together will administer and oversee 34 clinical sites across the United States and Puerto Rico. Specifically, the ALL ALS East Coordinating Center will be located at the Neurological Clinical Research Institute (NCRI) of Massachusetts General Hospital, MA, and will administer 15 clinical sites.

MGH NCRI brings extensive experience functioning as coordination center and leading scores of high-quality, multi-site ALS observational studies, biobanking projects and clinical trials, in partnership with industry, academic investigators, and not-for-profit research groups. The new ALL ALS Consortium will provide large-scale, centralized, and readily accessible infrastructure for collection and storage of a wide range of data, including longitudinally collected clinical measures and biofluids from 1) people living with ALS, 2) people at genetic risk for developing Amyotrophic Lateral Sclerosis (ALS), and 3) healthy controls.

To foster wide representation across populations, data will be collected from both remote and in person visits, and many clinical sites will be located in geographical areas with underrepresented minorities. Furthermore, to facilitate future research and collaboration, data will be collected and harmonized in a single central data portal.