SC04 The NARCOMS Registry: Participation Review 1993-2013

Thursday, May 30, 2013
Stacey S Cofield, PhD , Biostatistics, University of Alabama at Birmingham, Birmingham, AL
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
Gary Cutter, PhD , Biostatistics, University of Alabama at Birmingham, Birmingham, AL
Ruth Ann Marrie, MD, PhD, FRCPC , University of Manitoba, Winnipeg, MB, Canada
Robert J. Fox, MD, FAAN , Mellen Center for Multiple Sclerosis Treatment and Research, Cleveland Clinic, Cleveland, OH

Background: The North American Research Consortium on Multiple Sclerosis (NARCOMS) Registry was developed in 1993 by the Consortium of Multiple Sclerosis Centers (CMSC) with the goal of becoming a long-term, voluntary, patient-driven MS registry to facilitate research. The registry expanded to include a longitudinal component in 2000.

Objectives: To describe the socio-demographic and clinical characteristics of the participants enrolled in NARCOMS, and the longitudinal data available in NARCOMS from 1996-January 2013.

Methods: Participants complete a detailed enrollment survey including socio-demographic characteristics, disease and medication history and disability status, measured by the Patient Determined Disease Steps (PDDS). In addition, update surveys are conducted twice a year to assess current symptom and disability status and any changes in MS disease course and associated medical history.  Descriptive measures will be presented as N(%), Mean(SD) or Median(Range), as applicable.

Results: The first participant enrolled in 1996 and since over 36,000 unique participants have enrolled. The majority of enrollees are Female (73.7%), Caucasian (94.7%), and reside within the US (97.9%): 28.4% in the South, 24.9% Midwest, 23.6% West and 23.2% Northeast; with a mean(SD) age at enrollment of 46.9(11.0), 9.3(9.1) years since diagnosis but with 30.5% having enrolled within 3 years of diagnosis. We have captured more than 200,000 update surveys from 25,000 participants; with an average of 15,000 updates received annually. 51 participants have competed every semi-annual update since 2000, and 637 have completed every update since their enrollment after 2000.  Fifty percent of participants have completed at least 5 update surveys with an average follow-up of 6 years for all participants with at least 1 update survey. MS characteristics and disability at enrollment and overtime will also be presented.

Conclusions: NARCOMS is the largest patient-driven registry of MS, with extensive disease history and disability information.  With longitudinal follow-up data collected since 2000, NARCOMS provides a unique resource for researchers on a broad cohort of persons living with MS.