The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS), a collaborative effort involving other multiple sclerosis (MS) registries, clinicians, researchers and patients in the U.S. and parts of Canada.
NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with an interest in MS. It operates under the auspices of the Consortium of Multiple Sclerosis Centers (CMSC).
It consists of a database of clinical records and patient-centered outcomes, providing clinicians and scientists with a greater and more integrated ability to track the incidence, prevalence and course of MS.
Like many registries, NARCRMS includes data collected by physicians, like neuroimaging scans, genetic markers, cognitive assessments and specimen collection, and testing for identification of biomarkers of disease progression. It also adds patient-reported outcomes focused on disease challenges and impacts on daily life. Its goal is to improve the understanding of MS, facilitate multi-level care, and aid in recruiting patients into clinical trials.
“NARCRMS addresses a pressing need in MS research and care,” Cyndi Zagieboylo, president and chief executive officer of the National MS Society, said in a press release. “By collaborating with NARCRMS, we can more effectively utilize data to advance our understanding of MS and do more to help people with MS live their best lives.”
NARCRMS is the first open-source database to connect MS centers across North America to regional databases by state, region and zip code. To date, NARCRMS has recruited 10 centers, with another three in the process of coming aboard, and has enrolled 113 patients.
The registry builds on North American Research Committee on Multiple Sclerosis (NARCOMS), the oldest patient-driven registry in the U.S. using patient experiences to advance MS clinical care and life quality.
NARCOMS was created in 1993 by the CMSC. More than 37,500 people had joined the registry as of 2015. Researchers used NARCOMS data on 2014 to report on outcomes in switching treatments, therapy effectiveness, disease progression, co-existing conditions, and other topics that help understand the MS experience.
“We are grateful the Society has decided to partner with us on this pioneering effort to accelerate collaboration and more effective utilization of data on behalf of all people living with MS,” said June Halper, president and CEO of the CMSC.