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.

Dr. Kottil Rammohan

Dr. Kottil Rammohan is the NARCRMS Project Director. Dr. Rammohan is a Professor of Clinical Neurology; Director of the MS Center of Excellence; and Chief of the Multiple Sclerosis Division at the University of Miami.

The aims of the NARCRMS initiative are to:

  • Establish a national registry and longitudinal database of clinical and patient-based information
  • Establish “Cores” of repositories of clinical, genetic, and radiological data, and various biomaterials for developing biomarkers for this disorder across the United States
  • Develop “Research Interest Groups” (RIGS) from within the participating centers to promote collaborative efforts to utilize the data as they become available, to address specific unanswered questions in this disorder