The North American Registry for Care and Research in Multiple Sclerosis

Background: Numerous databases exist internationally and have been ongoing for several years. Until recently, a database linking Multiple Sclerosis (MS) centers in North America (NA) has been absent. NARCRMS was developed to allow stakeholders to freely access de-identified data and is the first database to link MS Centers in NA. This database captures clinical records and patient-reported and clinician-reported outcomes.

Objectives: To develop a clinician-based registry and database linking many MS centers across NA to acquire longitudinal outcomes of people with MS. NARCRMS aims to be a repository of clinical, genetic and radiological data, and biomaterials for developing biomarkers. NARCRMS plans to develop Research Interest Groups from within participating centers to promote collaborations to address specific unanswered questions related to MS.

Methods: NARCRMS is a special project of the Consortium of Multiple Sclerosis Centers (CMSC) and is overseen by the CMSC Board of Governors.  The NARCRMS Steering Committee, comprised of key leaders in the field, sets policies for operations and is developing strategies for expanding collaborations with other registries. Inclusion criteria require disease onset of CIS or MS within the prior 10 years, age at enrollment of 18-50, inclusive, and EDSS ≤ 6.5.  This HIPAA-compliant registry uses the OpenClinica application with password policies, audit history, role based access control, and a user access log. NARCRMS currently receives funding from the CMSC and several industry supporters.

Results: Eleven MS centers are currently NARCRMS sites.  As of March 23, 2018, 147 people with CIS or MS are enrolled.  Genders include male (37), female (106), transgender male (1) and no information (3).  Self-identified races represented include African American (24), Caucasian (109), African American/Caucasian (2), South Asian (e.g. India) (3), East Asia (e.g. China/Japan/Korea) (1), Aboriginal/Native American (1) and no information (7).  Thirty-six (36) self-identify as Hispanic with the remained non-Hispanic (106), unknown (2) or no information (3).  Birthplaces include 21 different US states, Puerto Rico and 11 other countries (Bahamas, Canada, Colombia, Cuba, Israel, Jamaica, Jordan, Mexico, Nicaragua, Saudi Arabia and Ukraine).  

Conclusions: NARCRMS is in operation and actively enrolling people with MS who meet inclusion criteria. We expect to eventually have 20 sites, chosen to geographically represent all regions of NA.