Established in 1993, the North American Research Committee on Multiple Sclerosis (NARCOMS) patient registry began as the largest robust data set robust data set containing detailed longitudinal symptom and treatment records for MS patients in the United States and Canada. Currently NARCOMS and the U.S. Latino Registry have reached over 38,500 MS patients, with plans to collaborate and expand reach through collaboration with Latin American and other international MS organizations.
Patients respond to specific research queries and update their ongoing symptomatic and treatment records on through written and on-line surveys in English and Spanish. This information provides a valuable window on the long-term status and needs of individuals with MS. NARCOMS studies have resulted in a wide range of scientific presentations and publications helping researchers, clinicians and patients learn more about quality of life outcomes, treatment effects, epidemiology, healthcare delivery, alternative therapies and clinical trial opportunities.
Funding secured through the Foundation of the CMSC has enabled detailed evaluation and analysis by visiting Scientist Fellows and extended analysis of effects of disease treatments. Grants to enable the translation of database materials and surveys into Spanish have allowed for the study of important information from Spanish-speaking patients
The registry is staffed by a multidisciplinary team of experts in MS research, statistics and epidemiology, based across North America.
Robert Fox, MD, Managing Director NARCOMS Registry
The Mellen Center for Treatment and Research
Cleveland Clinic Foundation, Cleveland, Ohio
The NARCOMS data coordination center is located at the UT Southwestern Medical Center, and is directed
by Amber Salter, PhD. To learn more about the registry and the NARCOMS effort, please visit www.narcoms.org