The ALS Research Collaborative: A Long Running Multimodal ALS Natural History Resource

The ALS Research Collaborative (ARC) is a longitudinal, multimodal natural history study of amyotrophic lateral sclerosis (ALS) hosted by the ALS Therapy Development Institute. ARC integrates self-reported clinical data, digital speech and movement recordings, genomic and biomarker profiles, electronic health records, fibroblasts, and fibroblast-derived induced pluripotent stem cell lines from a global cohort of more than 1,500 participants, including individuals with ALS and asymptomatic genetic carriers. These data are curated in the ARC Data Commons, a Looker-powered platform that enables advanced querying, visualization, and export. ARC data are harmonized to the Observational Medical Outcomes Partnership (OMOP) Common Data Model, facilitating large-scale observational studies across institutions. Biological samples and data are available under a data use agreement. ARC represents one of the largest open ALS research platforms to date, developed in dialogue with researchers and people living with ALS. This resource supports precision medicine efforts by enabling discovery of ALS subtypes, biomarkers, and therapeutic targets.