Pauline Anderson

June 02, 2013

ORLANDO, Florida — The North American Research Committee on Multiple Sclerosis (NARCOMS), the world's largest multiple sclerosis (MS) patient registry, is celebrating its 20th anniversary.

Speaking at the 5th Cooperative Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ATRIMS), Gary R. Cutter, PhD, NARCOMS Coordinating Center director, called it an "important milestone."

Now with an enrollment of 37,000, which represents an estimated 10% of all MS patients in the country, NARCOMS continues to facilitate research on every aspect of MS that could eventually lead to a cure. Information from detailed, twice-yearly surveys completed by MS patients also helps raise awareness among doctors, patients, and caregivers.

The registry is "not just a recruitment tool" but is also a "unique" resource for researchers, said Dr. Cutter. At this year's meeting, researchers presented 7 posters covering areas from basic science to symptomatic management. According to Dr. Cutter, the CMSC supports about 20 projects annually. Last year, organizers started a quarterly magazine — NARCOMS Now.

Although the registry itself was launched in 1993, recruitment began in 1996. Since then, it has increased at a rate of 500 to 1000 patients per year, said Dr. Cutter. About 2.2% of participants live outside the United States.

Enrollees are representative of the general MS population — for example, 74% are female, the typical age of diagnosis is 37 years, and the median age at onset of MS symptoms is 29 years. The median time from diagnosis to NARCOMS enrollment is 6 years.

Patients complete confidential questionnaires either online or on paper, providing information on lifestyle, MS disease history, general medical history, relapse history, and healthcare utilization. Organizers collect up to 20,000 surveys per year. There is follow-up on more than 25,000 participants.

Since 2001, the surveys have included Patient Determined Disease Steps (PDDS) and Performance Scales (PS) so researchers can collect data for things such as the average time to early cane use.

It also collects information on use of MS therapies. Until 2010, more than 1700 patients reported using some disease-modifying therapy for at least 5 years, and more than 4300 reported changing, adding, or discontinuing MS therapies. From 2004 to 2011, 81.9% of 20,413 respondents reported having taken at least 1 immunotherapy, and of these, 60.4% said they had taken at least 1 interferon.

The database is also a rich source of information on healthcare utilization, broken down by sex, behaviors with regard to new oral agents, use of symptomatic therapies, lifestyle habits such as smoking, and military history. According to Dr. Cutter, over 7000 NARCOMS participants have been associated with the military.

For example, at the meeting here, Tuula Tyry, PhD, Barrow Neurological Institute, St. Joseph's Hospital and Medical Center, Phoenix, Arizona, presented data on the prevalence of sleep disturbance in the NARCOMS registry. The researchers reported that almost one third of patients scored as having clinically relevant daytime sleepiness, defined as a score of > 9 on the Epworth Sleepiness Scale, including almost 6% with scores of 16 or higher, indicating severe symptoms. Insomnia and obstructive sleep apnea were common, often undiagnosed or untreated.

The information also facilitates collaboration between MS centers worldwide to share knowledge and improve clinical care and quality of life of MS patients.

Future aims are to include biological samples, although Dr. Cutter said one road block to this initiative is the cost. Enrollment is free, however, and is open to any MS patient. For more information, visit

5th Cooperative Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ATRIMS). Workshop 4, Poster SX27. Presented May 30, 31, 2013.


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