SC27 The NARCOMS Registry: Publication Review 1996-2012

Thursday, May 30, 2013
Amber Salter, MPH , Biostatistics, University of Alabama at Birmingham, Birmingham, AL
Tuula Tyry, PhD , Barrow Neurological Institute, St. Joseph's Hospital and Medical Center, Phoenix, AZ
Stacey S Cofield, PhD , Biostatistics, University of Alabama at Birmingham, Birmingham, AL
Gary Cutter, PhD , Biostatistics, University of Alabama at Birmingham, Birmingham, AL
Robert J. Fox, MD, FAAN , Mellen Center for Multiple Sclerosis Treatment and Research, Cleveland Clinic, Cleveland, OH
Ruth Ann Marrie, MD, PhD, FRCPC , University of Manitoba, Winnipeg, MB, Canada

Background: The North American Research Consortium on Multiple Sclerosis (NARCOMS) was developed in 1993 by the Consortium of Multiple Sclerosis Centers (CMSC) with the goal of becoming a long-term, patient driven MS registry to facilitate MS research.  Since the first participant enrolled in 1996 and longitudinal follow-up began in 2000, over 36,000 participants have enrolled; longitudinal follow-up data are available on over 25,000 participants.

Objectives: To describe the number, type and topic area of research projects that have resulted in publications or presentations utilizing data collected through NARCOMS.

Methods: Prospective researchers work with the NARCOMS Executive Committee to plan potential projects. Such projects may involve using existing NARCOMS data, gathering new data via a regular NARCOMS semi-annual update survey or via a stand-alone survey designed by the researcher with input from the Executive Committee, or using NARCOMS to recruit participants whom the researcher will enroll locally. Study designs may be cross-sectional or longitudinal, retrospective or prospective. Studies may aim to gather data from all NARCOMS participants or from a targeted subgroup, depending upon the specific project.

Results: The first peer-reviewed study was published in 1999, with a total of 185 abstracts or publications utilizing NARCOMS data.  Since 2006, 10-13 presentations have been made at conferences each year, and 3-10 peer-reviewed manuscripts have been published annually.  The most common areas of research covered by the 55 manuscripts have been Symptoms of MS (18.2%), Comorbidities (16.4%), Employment and Quality of Life (12.7%), and the Demographics and Diagnosis of MS (10.9%).  These publications have appeared in a variety of journals, including Multiple Sclerosis (11), International Journal of MS Care (9) and Neurology (8).   In addition to knowledge translation to clinician and researchers, dissemination to NARCOMS participants is also an important part of our mission.  From 2009-2011, 24 articles were contributed to the Multiple Sclerosis Quarterly Report of the United Spinal Organization, which was distributed to all NARCOMS participants. Since 2012, participants have received NARCOMS Now the quarterly publication for NARCOMS, containing NARCOMS research results, interviews with researchers and neurologists, and MS lifestyle and global news.

Conclusions: The NARCOMS registry is a valuable resource for epidemiological research in MS.