Talking to people with MS is the best way to learn about how it affects their lives, and this knowledge can then be used to improve care and quality of life. Recognizing this, the Consortium of Multiple Sclerosis Centers (CMSC) created a patient registry in 1993 called NARCOMS (North American Research Committee on Multiple Sclerosis), to capture the real-life experiences of people living with MS.
More than 37,500 people have joined the registry. More participants are needed now to keep it growing and to be fully representative of people living with MS.
Anyone with a diagnosis of MS can participate in NARCOMS and contribute to its research studies. Participants are asked to fill out an enrollment questionnaire, and then complete surveys twice a year. Each survey can be completed either online or in print. Participants in other research projects like iConquerMS, PatientsLikeMe, or ClinicalTrials.gov are welcome to join NARCOMS.
NARCOMS conducts other studies in addition to the biannual survey, and provides recruitment assistance to other MS researchers. Participation in these studies is optional. NARCOMS does not sell or share personal information. All analyses are conducted with anonymized data that cannot personally identify any participant.
In 2014 alone, researchers used data from the registry participants to report on switching treatments, effectiveness of medications, disease progression, co-existing conditions, overactive bladder, and many other topics to help understand the MS experience.
In just one example of the research that NARCOMS facilitates, John Rinker, II, MD (University of Alabama at Birmingham) and colleagues described the largest study group to date of people living with MS-associated tremor. Surveys completed by nearly 13,000 NARCOMS participants showed that 46% reported experiencing tremor. A detailed questionnaire was sent to 552 of these people, and the results showed that even those with mild tremor experienced some degree of unemployment, disability and use of symptomatic medication, and these increased with tremor severity. (British Medical Journal Open 2015; 5(1): e006714) Gathering such information is the first step to finding solutions for tremor, and NARCOMS makes such studies possible.
In another study, Amber Salter, MPH (University of Alabama at Birmingham) and colleagues investigated 308 participants’ perspectives on switching disease-modifying therapies. The discussion to switch was started almost equally by physicians and participants. A higher proportion of participants started the discussion to switch to an oral therapy compared to those switching to an injectable or infusion therapy. The main reasons for switching were most often a physician’s recommendation (24.5%) or the patient’s perception that treatment was not working (13.7%). Seventy-four percent of participants would not consider switching back or trying something else. (Patient Preference and Adherence 2014; 8: 971–979) Following these participants will provide valuable information on satisfaction with the chosen therapy, and its effectiveness. Understanding patient perspectives is crucial as the increasing availability of disease-modifying therapies makes treatments decisions more complicated.
To sign up, please visit the website at www.narcoms.org, or call 800-253-7884 (toll free) from 8 a.m. to 5 p.m. Central Time, Monday through Friday.