The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) is a physician/clinician-based registry and longitudinal database of clinical records and patient-centered outcomes. NARCRMS collects complete patient and physician datasets to track the incidence, prevalence, and the longitudinal history of MS over time. Physician-collected data includes neuroimaging scans, genetic markers, EDSS/cognitive assessments and specimen collection/testing for identification of biomarkers of disease progression. Patient-reported outcomes will become an integral part of the data set in order to complement clinical information. NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with interest in MS, under the auspices of the Consortium of Multiple Sclerosis Centers (CMSC).
NARCRMS is a highly collaborative effort involving other MS registries, research investigators and patients. It allows the linkage of centers and facilitates regional analysis of data by state, region and zip code. The recruitment of patients in clinical trials may be enhanced, as NARCRMS provides access to a greater number of patients. NARCRMS utilizes actual data rather than best-guess estimates, which will make the design and conduct of clinical trials easier. The registry allows stakeholders to freely access de-identified data. NARCRMS is the first open source database to link North American MS Centers in the US and parts of Canada.
