Abstract Details

Title The North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) (On behalf of the NARCRMS Site PIs)

Topic Multiple Sclerosis

Presentation(s) P4 - Poster Session 4 (5:30 PM-6:30 PM)

Poster/Presentation
Number 15-067

Objective Development of a clinician-based registry and database linking MS centers across North America (NA) to acquire longitudinal outcomes of people with MS. NARCRMS will be a repository of clinical, genetic, MRIs and biomaterials. NARCRMS will develop Research Interest Groups to address unanswered questions related to MS.

Background Until recently a database, linking Multiple Sclerosis (MS) centers across NA has been absent. NARCRMS was created to record longitudinal patient/clinician reported outcomes and to provide stakeholders with free access to anonymous data. It is the first database to link MS Centers across North America, namely the USA and Canada.

Design/Methods NARCRMS is a special project of the Consortium of Multiple Sclerosis Centers (CMSC). The Steering Committee sets operation policies and strategies to expand collaborations with other registries. Inclusion criteria require disease onset of CIS or MS within the prior 15 years, age 18-65 at enrollment and EDSS <6.5. This HIPAA-compliant registry receives funding from the CMSC and several industry supporters.

Results Seventeen MS centers are currently enrolling. As of October 18, 2018 245 people with CIS or MS have enrolled. Genders include male (57), female (165) and transgender male (1). Self-identified races represented include African American (41), Caucasian (170), African American/Caucasian (2), South Asian (3), East Asian (1), Aboriginal/Native American (1) and unknown (2). Seventy-two self-identified themselves as Hispanic with the remaining as non-Hispanic (149) or unknown (2). Birthplaces include 27 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 enrolling people with MS who represent a vastly diverse group. We expect to activate 25 sites that will geographically represent all regions of NA and capture a representative population of people with MS in all disease stages. This natural history cohort will ultimately include 1,000 patients.

Authors/Disclosures
Kottil W. Rammohan, MD (University of Miami) PRESENTER	Dr. Rammohan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Biogen. Dr. Rammohan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Novartis. Dr. Rammohan has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Genentech. Dr. Rammohan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Alexion. Dr. Rammohan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Genzyme. Dr. Rammohan has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for EMD Serono. The institution of Dr. Rammohan has received research support from Genentech. The institution of Dr. Rammohan has received research support from Genzyme. The institution of Dr. Rammohan has received research support from EMD Serono. The institution of Dr. Rammohan has received research support from Alexion.
David K. Li, MD (University of British Columbia)	Dr. Li has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Biogen. Dr. Li has received personal compensation in the range of $0-$499 for serving on a Speakers Bureau for Biogen. Dr. Li has received personal compensation in the range of $0-$499 for serving on a Speakers Bureau for Academy of Health Care Learning. Dr. Li has received personal compensation in the range of $0-$499 for serving on a Speakers Bureau for Sanofi-Genzyme. Dr. Li has received personal compensation in the range of $0-$499 for serving on a Speakers Bureau for Consortium of MS Centers.
June Halper, RN, ANP (CMSC)	Ms. Halper has nothing to disclose.
Sara McCurdy Murphy	No disclosure on file
	No disclosure on file

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