Clinic-based Multicenter ALS Natural History Data Collection

The ALS Natural History Consortium is a 9-site consortium collecting real-world data on a comprehensive cohort of people living with ALS ("PALS") at our multidisciplinary ALS centers. Unlike other ALS data repositories, all PALS are offered participation and recruitment is > 90% of PALS seen in our clinics. We will apply our longitudinal, prospective and retrospective data collection to characterize the ALS population in a real-world environment for use in disease state and clinical trial modeling, prediction of care needs, and identification of care gaps throughout the care timeline. This subcontracting entity currently participates in the ALS Natural History Consortium and has a long standing clinical relationship with this cohort and the University of Minnesota. For this study, they will enroll an estimated 274 subjects over the project period. Participating sites will be reimbursed a fixed rate per subject for completing each data set and uploading it to the MGH central data repository. Participating site PIs will meet regularly with Dr. Walk and contribute to manuscript preparation and submission.