MS Research Roundup: June 4, 2014
Special CMSC Meeting Edition: Exercise and Aggressive Rehabilitation; Patient Satisfaction With CCSVI; Ambitious MS Database Being Planned
Today’s edition of MS Research Roundup concentrates on last week’s joint meeting in Dallas, Texas, of the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS). The scientific abstracts PDF is here. Send us your tips: firstname.lastname@example.org.
In the basic immunology session at the CMSC-ACTRIMS meeting, Scott Newsome, D.O., a neurologist at Johns Hopkins Hospital in Baltimore, Maryland, interrupted his talk on disease-modifying therapies to put in a plug for an aggressive rehabilitation program, especially for treating progressive forms of MS. These programs “do more for the disease than the drugs we prescribe,” he said. Indeed, many abstracts at the CMSC-ACTRIMS meeting addressed the role of exercise and physical therapy in MS. The people with MS who received the most benefit from Internet-based exercise coaching were those most able to exercise—patients with less disability, in the normal weight range (versus obese), and with relapse-remitting MS, reported Robert Motl, Ph.D., of the University of Illinois, Urbana-Champaign. In a separate analysis of the same data, the overall improvements seen in measures of physical activity were accompanied by reductions in time spent sitting, reported Rachel Klaren, a graduate student in Motl's laboratory. Time spent sitting "has been described as 'the new smoking,' " she noted, because of its adverse effects on a host of health outcomes. For those who need a cane or crutch to walk, riding an indoor bike with the aid of electrically stimulated leg muscles, called functional electrical stimulation cycling, may be an effective exercise option, reported Deborah Backus, Ph.D., and colleagues from the Shepherd Center in Atlanta. Researchers also tested other ways to boost mobility, including a pneumatic-powered ankle-foot orthosis and a service dog. Exercise may play some role in prevention. Being overweight (a body mass index of 25 or higher) in early adulthood was associated with a younger onset of MS symptoms and diagnosis, according to a recall survey of 237 women by Katelyn Kavak of the Jacobs MS Center in Buffalo, New York, and colleagues. The exercise theme carried well beyond the meeting rooms and abstract book: MSDF has never observed a hotel fitness center so crowded with speakers and attendees each morning. (MedPage Today, Neurology Reviews)
Despite receiving poor pre- and postoperative care in many cases, most Canadian multiple sclerosis (MS) patients who left the country to undergo a controversial procedure to clear blocked neck veins were relatively satisfied overall, a researcher reported at the CMSC-ACTRIMS meeting. The preliminary findings came from a study of nearly 900 people with MS created to track the outcomes of people who turned to medical tourism to treat chronic cerebrospinal venous insufficiency (CCSVI). Thousands of Canadians with MS traveled to the United States and elsewhere when the Canadian health system refused to cover the unproven experimental procedure, paying $11,000 or more out of pocket. In the face of powerful patient pressure, research organizations scrambled to catch up with studies to evaluate the diagnosis and therapy. A slew of reports have cast doubt on the link between blocked neck veins and MS. In the survey, 124 patients reported traveling to other countries for cerebrospinal venoplasty, nearly 60% of whom noted they received no follow-up investigations at the center performing the procedure, and more than 40% of whom had no follow-up care of any kind, according to Jamie Greenfield, MPH, of the University of Calgary in Alberta. (Globe and Mail, MedPage Today, New York Times, The Alberta MS Initiative)
New MS Database Being Planned
An ambitious database designed to capture detailed clinical information on all North American MS patients and follow them over time is in the advanced planning stage. The "totally novel" database promises to provide "a vast amount of information" that will "transform care and transform research," giving clinicians a much broader understanding of the disease, said Kottil W. Rammohan, M.D., a professor of clinical neurology at the University of Miami, Florida, at the CMSC-ATRIMS meeting. The database will be known as the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) and will be updated by physicians. NARCRMS will operate in parallel with the North American Research Committee on Multiple Sclerosis (NARCOMS), the global self-reported patient registry updated with twice-yearly surveys. Patients will participate through the NARCOMS portal, including giving consent for their information to be incorporated in the physician-reported database. Both are administered by CMSC. The industry-sponsored database is modeled after the Alzheimer’s Disease Neuroimaging Initiative. Rammohan pledged an open-source database (with privacy protected by deidentified data), available to researchers, clinicians, and patients. (Alzheimer’s Disease Neuroimaging Initiative, CMSC-ACTRIMS, Medscape)