The MSplus Foundation
MS/Cancer Support Group discusses current MS research
In May 2017, MS/Cancer members learned about three studies conducted on patients with Multiple Sclerosis (MS) to help its members stay current on MS research.
These stories are from the National MS Society website and links are provided after each study.
Study Finds That Cognitive Function in People with MS Improves with an Online Active Cognitive Training Program
May 22, 2017
· In a trial funded by the National MS Society, researchers found that a special online active cognitive training program improved cognitive function in people with MS.
· Participants included 135 people with any type of MS who were experiencing some cognitive problems. They used the training program for 60 hours over 12 weeks, in their own homes.
· This was the largest, controlled trial that has tested a brain training program in people with MS. Future studies will help make clear what types of training will have the best results, who will respond most successfully, and how long benefits last.
· The team (Leigh Charvet, PhD, Lauren Krupp, MD, and colleagues, now at NYU School of Medicine) published their findings in the open-access journal PLOS One on May 11, 2017.
Background: Cognitive problems are common in people with MS. Among the cognitive functions that may be affected are the ability to learn and remember information, to process information quickly, and to organize, plan, and problem-solve.
Up to now there has not been an adequate treatment that successfully meets the goal of improving the speed and accuracy of information processing to improve performance in real-world situations. However, recent computer/online-based training approaches to help people with cognitive difficulties – known as adaptive cognitive remediation (ACR) programs – use cutting-edge technology. Much of the training can be done online, making it easier for many people to participate. ACR programs have already shown benefit in normal aging and other disorders. The program used for this study is a version of the online “Brain HQ Exercise” program, specifically designed for research studies.
The Study: Participants were 1345 people with any type of MS whose cognitive testing indicated some difficulty. They were randomly assigned to either the ACR program (74 people) or to a training program of ordinary computer games (61 people). The participants in the ACR program used a set of 15 exercises targeting speed, attention, working memory, and executive function. The 61 in the control group used a gaming suite with word puzzles and other games. Participants used these programs for 60 hours over 12 weeks, in their own homes. The researchers checked in with the participants regularly, and their computers were monitored to determine their compliance with the training. The primary outcome measured was a battery of neuropsychological tests used to measure cognitive impairment in people with MS.
Researchers found that the people in the active brain training group had significantly greater improvement in cognitive function, even though those in the control group spent more time on the computer games program than the active training group. Compliance and participation was high across both groups. The team, Leigh Charvet, PhD, Lauren Krupp, MD, and colleagues now at NYU School of Medicine, published their findings in the open-access journal PLOS One on May 11, 2017. (The study was conducted when the team was at Stony Brook University Hospital, Stony Brook, NY.)
Comment: This was a well-designed study and the largest clinical trial ever done of a brain training program in MS. The results suggest that this kind of online training program, accessed from home, can improve brain functioning in people who have MS. Home training has many potential benefits: high compliance, relatively low cost, and easily personalized programs. “The remote approach is especially exciting for the potential of opening up participation … for individuals who are largely home-based or who are struggling to maintain employment and reluctant to participate in rehabilitative activities that would interfere with their work and family time commitments,” say the researchers.
Future studies will help make clear what types of “brain training” will have the best results, who will respond most successfully, and how long the benefits last. The effects of depression and fatigue – common in MS and known to influence brain functioning – also need to be taken into account.
The original story can be found at https://www.nationalmssociety.org/About-the-Society/News/Study-Finds-That-Cognitive-Function-in-People-with
Researchers Recruiting African Americans with MS Across the U.S. for Genetics Studies – Key to finding cause of MS and better treatments
February 6, 2017
Rationale: Genes are known to play a role in determining who is susceptible to developing multiple sclerosis, and may also influence the course of the disease. People living with MS can make a difference in studies searching for these genes by donating their DNA from blood samples. Identifying the exact location of MS genes could help determine who is at risk for developing the disease and may provide clues to its cause, prevention, and better treatment. Focusing on ethnic groups with lower susceptibility to MS (such as African-Americans) and higher susceptibility (such as individuals of Northern European descent), and searching for what is common and what is different in their genes may help pinpoint regions that contain MS genes. Large numbers of participants are needed to accelerate this research.
Details: It is not necessary to travel to San Francisco to participate in this study. Once an individual has completed the initial online intake form and has agreed to participate, they are emailed the links to two additional online forms and sent a kit via express mail. The kit includes a consent form, a health information privacy form, and a medical records release form. The kit also includes everything necessary for the blood draw, which can be taken to your local Quest Diagnostics Lab, where the blood can be drawn and then returned in a prepaid envelope to the UCSF MS Genetics Lab. There is no cost to the study participants.
Contact: To participate or request additional information, complete our intake survey. Or you may contact us directly:
Clinical Research Coordinator
The original story can be found at
MS Trial Alert: Investigators Recruiting for Study of High-Dose Biotin (MD1003) in Progressive MS
May 17, 2017
Summary: Investigators worldwide are conducting a clinical trial testing high-dose biotin (MD1003, MedDay Pharmaceuticals SA) versus inactive placebo in 600 people with secondary or primary progressive MS. Participants can remain on existing disease-modifying treatments (such as ocrelizumab), if treatment has been stable for at least 90 days prior to enrollment. The study is sponsored by MedDay.
Rationale: Biotin is considered a form of vitamin B, and is a component of enzymes in the body that generate energy for cells. Biotin, also known as vitamin H, is usually obtained from food in tiny concentrations. High dose, pharmaceutical grade biotin (concentration >10,000 times the usual daily dose, or MD1003) was tested in a clinical trial in France involving 154 people with primary-progressive MS or secondary-progressive MS. They were given high-dose biotin (MD1003) or inactive placebo for 48 weeks. The results suggested that 12.6% of those given MD1003 showed improvement in disability (using either the EDSS scale that measures disability progression, or improvement in a timed walk), versus none of those on placebo, and there were no serious safety issues reported. (MS Journal 2016 Nov;22(13):1719-173).
Eligibility and Details: Participants are aged 18-65 years old with a diagnosis of primary or secondary progressive MS. Participants can remain on existing disease-modifying treatments, if treatment has been stable for at least 90 days prior to enrollment. Further criteria are available from the contact below.
Participants are being randomly assigned to receive a capsule of MD1003 100 mg or a placebo capsule three times daily for 15 months. When all study participants have completed 15 months of double-blind therapy, all patient may enter an open label extension where all participants will receive MD1003 100 mg three times daily for 12 months.
The primary outcome being measured is the proportion of participants who improve on either the EDSS scale that measures disability or a test that measures mobility. Other outcomes being measured include cognitive function, quality of life, and activity on MRI scans.
Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, visit www.spi2study.com or call Dr. Robert Lasser at 617-378-8701.
The original story can be found at
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