The NARCOMS Patient Registry: A Resource for Investigators

Patient registries facilitate research on populations affected by rare conditions or specific diseases. Data from the registries offer insight into diagnosis, symptoms, treatment, and course of disease. Two well-established registries in neurology are the Amyotrophic Lateral Sclerosis (ALS) Patient Care Database and the Alzheimer's disease registry. There are several physiciandriven registries around the world that collect clinical data on patients with multiple sclerosis (MS). The New York State MS Consortium Registry gathers data on patients in the New York area, and the Multiple Sclerosis-Computed Stored Ambulatory Record (MS-COSTAR) and European Database for Multiple Sclerosis (EDMUS) compile clinical and research data in clinics throughout Europe and North America. The North American Research Consortium on MS (NARCOMS) has also established a registry for research on MS. The NARCOMS Patient Registry is unique in that it is patient-driven. Along with data on demographics, healthcare resources, disease status, therapies, and disability status, registrants provide a wide range of information related to their experience with multiple sclerosis.