Overview

NARCRMS is the North American Registry for Care and Research in Multiple Sclerosis, with geographic representation across the US and Canada, and captures patient-reported and physician-reported outcomes. It is a Special Project of the Consortium of MS Centers (CMSC).

NARCRMS will be a highly collaborative effort involving other MS registries, research investigators and patients. It will allow the linkage of centers and will facilitate regional analysis of data by state, region and zip code. The recruitment of patients in clinical trials will be enhanced, as NARCRMS will provide access to a greater number of patients. NARCRMS will utilize actual data rather than best-guess estimates, which will make the design and conduct of clinical trials easier. The registry will allow stakeholders to freely access de-identified data. NARCRMS will be the first open source database to link North American MS Centers in the US and parts of Canada.

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 :

  1. Establish a national registry and longitudinal database of clinical and patient-based information
  2. Establish “Cores” of repositories of clinical, genetic, and radiological data, and various biomaterials for developing biomarkers for this disorder across the United States
  3. 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