NARCOMS

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…

In a nationwide survey of caregiver abuse and neglect among Americans with advanced multiple sclerosis (MS), more than half of respondents reported some form of mistreatment, with psychological and financial abuse being the most common. Having a caregiver with a mental illness was the greatest risk factor for mistreatment, the survey…

Sex, age, disability level, and current disease-modifying therapy use are linked to how multiple sclerosis (MS) patients weigh the potential benefits and safety risks of treatments, new research from two teams funded by the National Multiple Sclerosis Society shows. These studies shed light on how…

The stigma of multiple sclerosis can increase patients’ risk of depression, but a socially supportive environment, a sense of belonging and a sense of independence can help ease the problem, a study Penn State University study reports. Researchers have…

A diet rich in vegetables, fruits and whole grains may decrease symptoms and lessen disease progression in patients with multiple sclerosis (MS), a study suggests. The report, “Diet quality is associated with disability and symptom severity in multiple sclerosis,” appeared in the journal Neurology. “People with MS…

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.

Since the approval of the first disease-modifying drug (DMD) for MS back in the mid-1990s, another dozen or so have been added as treatment options. But, just as MS affects each patient differently, so do the drugs. Missing has been a tool to follow MS patients and their…

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…

Disabling tremors can affect as many as half of all people with multiple sclerosis (MS), but they are inadequately treated because of limited therapeutic options and are not sufficiently being studied, researchers at the University of Alabama at Birmingham reported. Their report, “Symptomatic Management of Multiple Sclerosis-Associated Tremor Among…

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, “…

The National Multiple Sclerosis Society is funding a new survey to understand how people living with multiple sclerosis (MS) weigh risks against benefits when choosing MS therapies. The survey was developed by Dr. Robert Fox, a neurologist, working with colleagues at the Cleveland Clinic and the MS patient…

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…

People caring for multiple sclerosis (MS) patients can have substantial physical and psychological health concerns, and their care can adversely impact their employment, according to research findings recently published in the International Journal of MS Care. The study is titled “Care Partners and Multiple Sclerosis,…

With 26 states plus the District of Columbia now allowing medical marijuana use, according to a recent North American Research Committee on Multiple Sclerosis (NARCOMS) survey, many people with multiple sclerosis are considering the herb as a therapeutic option. NARCOMS is a research program that allows people with Multiple Sclerosis…