DMTs Underutilized in Younger Patients, Study Indicates

Nearly a third of people with multiple sclerosis (MS) who are younger than 40 are not being treated with disease-modifying treatments (DMTs), even though younger individuals are expected to get the most benefit from DMTs, according to a new study. “DMTs for MS are more frequently used at…

National MS Society Endorses US-Canada Registry Aiming to Advance Research and Patient Care

The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis, a collaborative effort involving other multiple sclerosis 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. 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 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.

Physician Assisted Suicide’s Appeal to MS Patients in Unbearable Pain Highlights Urgency in Treating Depression

Half of the more than 7,500 multiple sclerosis (MS) patients responding to a recent survey revealed they’d consider physician-assisted suicide if they could no longer enjoy anything that made life worth living. In addition, 65 percent of respondents said they’d definitely or probably let a physician terminate their lives if they were…

#CMSC16 – Study of PPMS Patient Characteristics Highlights Need for More Information

People with primary progressive multiple sclerosis (PPMS) are usually older and more disabled than those with relapsing-remitting MS, researchers at Washington University reported. The team is studying demographic and clinical characteristics of PPMS patients enrolled in the NARCOMS registry, to better understand their unmet needs and possibly improve research into potential treatments. The study, “…

New MS Survey Looks into Patients’ Appraisal of Risks, Benefits When Choosing Therapies

A large-scale online survey, funded by the National Multiple Sclerosis Society  and developed by researchers, is investigating how multiple sclerosis (MS) patients perceive and evaluate the risks and benefits of available therapies. Investigators encourage MS patients to participate in the survey, titled “Multiple Sclerosis Risk Tolerance,” which can be…