North American Research Committee on Multiple Sclerosis (NARCOMS) is a project of the Consortium of Multiple Sclerosis Centers (CMSC), a not-for-profit professional organization for MS healthcare providers and researchers. The administrative office of NARCOMS, located at Barrow Neurological Institute in Phoenix, Arizona, maintains the largest voluntary, patient driven Multiple Sclerosis (MS) registry in the world. Over the past 10 years, more than 32,000 people with MS, including over 4,000 veterans, have participated in the registry by submitting health-related data by mail or online. Registry data have already been featured in 17 peer-reviewed journal articles and over 50 scientific posters and presentations.
The purpose of the registry is two-fold:
- • The registry serves to expedite recruitment of MS patients for clinical trials across the country and to reduce the cost associated with the process.• De-identified datasets are used to investigate important aspects of MS, such as the natural course of the disease, patterns of care, long- term effects of treatment and factors affecting the quality of life.
The project provides a unique opportunity for all MS patients over 18 years of age to facilitate MS research. All adults with MS are invited to join in this long-term research study by first enrolling in the registry by filling out a baseline survey and then completing an update questionnaire twice a year, either by mail or conveniently online (www.narcoms.org/ enrollment).
All information gathered is held confidential and used for statistical analyses only. Research results are published in scientific journals and shared with the participants in an informative quarterly publication, Multiple Sclerosis Quarterly Report, which is provided to all registry participants free of charge.
For additional information or to request an enrollmen form or other material, please call 1-800-253-7884 or contact us at narcoms@chw.edu .
