NARCOMS

The North American Research Committee on Multiple Sclerosis Global Patient Registry is a valuable database that houses information from over 45,000 people with MS. It aims to collect and maintain individuals' experiences with MS, which is essential to support long-term research. The registry provides important information to investigators studying disability progression, symptom severity, quality of life, and health services utilization. NARCOMS envisions utilizing the power of patient experience to improve clinical care and quality of life for persons with MS and their families through collaboration among centers of excellence and researchers in MS worldwide. NARCOMS provides a confidential method for people with MS to provide valuable information to researchers, serves as a worldwide research resource for people living with MS, and fosters new collaborations between researchers, patients, and healthcare providers to increase the characterization of effective treatments, disseminate research results, and enhance healthcare services' quality. While many MS research efforts focus on etiology and treatment, the NARCOMS database prioritizes the long-term experiences of people living with MS. This approach has led to research results being published in peer-reviewed publications and over 140 scientific presentations, demonstrating NARCOMS' strength derived from the large number of participants and their length of follow-up.