North American Research Committee on Multiple Sclerosis (NARCOMS) Project
Tuula Tyry, PhD, MAED,
The North American Research Committee on Multiple Sclerosis (NARCOMS) is a project of the Consortium of Multiple Sclerosis Centers (CMSC), a nonprofit professional organization for multiple sclerosis (MS) healthcare providers and researchers. NARCOMS management has been affiliated with the Barrow Neuroimmunology Program since 1992. The administrative office of NARCOMS at the University of Alabama - Birmingham (UAB) maintains the largest voluntary patient-driven Multiple Sclerosis (MS) registry in the world. Over the last 15 years, over 35,000 people with MS have participated in the registry by submitting data online or by traditional mail.
The registry serves two purposes:
- It expedites the recruitment of MS patients for clinical trials at Barrow and across the country and reduces the cost associated with the process.
- Deidentified 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 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 enrolling in the registry and completing an update questionnaire twice a year either by mail or online (The NARCOMS Questionnaire can be completed here). All information gathered is held confidentially and used for statistical analysis only under research oversight by the Institutional Review Board at UAB. Results of the research are published in scientific journals and the highlights are shared with the participants in a quarterly newsletter.
- In 2010 NARCOMS won the Robert M. Herndon award for the best article published in the International Journal of MS Care in 2009. (Marrie, R.A., Cutter, C., Tyry, T, Campagnolo, D., & Vollmer, T. (2009). Effect of physical comorbidities on risk of depression in multiple sclerosis. International Journal of MS Care, 11, 4, 161 – 165)
- Tuula Tyry, PhD, MAED
NARCOMS Program Manager
- Robert Fox, MD
NARCOMS Medical Director
- Ruth Ann Marrie, MD, PhD
NARCOMS Scientific Director, Narcoms Research Fellow 2005 – 2010
Winnipeg, Manitoba Canada
- Gary Cutter, PhD
NARCOMS Database Director
Barrow Neurological Institute
350 West Thomas Road
Phoenix, Arizona 85013