National Institutes of Health (NIH) funded “ALL ALS” consortium is a multi-institutional effort that aims to organize the ALS clinical research landscape in the US. ALL ALS is operating in partnership with several stakeholders to operationalize the recommendations of the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) Public Private Partnership. ALL ALS will provide a large-scale, centralized, and readily accessible infrastructure for the collection and storage of a wide range of data from people living with ALS (symptomatic cohort), participants at risk of developing ALS (asymptomatic ALS gene carriers), and people with no risks or symptoms for ALS (controls). Importantly, ALL ALS is designed to encourage community engagement, equity, and inclusion. Collected data include longitudinal clinical data and biofluids, genomic, tissue, and digital biomarkers that will be harmonized and linked to the central Accelerating Medicines Partnership ALS (AMP ALS) portal for sharing with the research community. ALL ALS consortium comprises two clinical coordinating centers, a data coordinating center and clinical sites distributed across the country and is led by a group of collaborative principal investigators. ALL ALS is the culmination of decades of ALS research collaborations.
