Columns The MS Wire - A Column by Ed Tobias An MS Study You Might Want to Join An MS Study You Might Want to Join by Ed Tobias | August 15, 2017 Share this article: Share article via email Copy article link I was surprised to see that a study of a potential MS drug labeled MD1003 is still accepting participants. It’s a study that I’d love to take part in, if only I was a few years younger. MD1003 is a high dose of biotin, a form of Vitamin B. When the results of an earlier MD1003 study were announced back in the spring of 2016, the principal author called them “especially remarkable.” That study showed that MD1003 slowed MS progression and improved the walking of more than 12 percent of the study subjects. “This is the first time that a drug has reversed the progression of the disease in a statistically significant proportion of patients,” Ayman Tourbah, professor at CHU de Reims, France, said in a press release. (This, however, may not be entirely correct as this kind of reversal has been reported by some users of the DMD Lemtrada). MD1003 impacts non-active MS What was particularly interesting to me about that study is that its subjects included patients whose symptoms were progressing, but their MS was not considered to be “active,” i.e., no recent relapses and no lesion activity appearing on an MRI. That describes my MS; no relapses or activity, but my walking has been getting worse. A new phase-3 study is recruiting Now, as reported a few months ago in a Multiple Sclerosis News Today story, a larger MD1003 study is underway. The researchers’ goal is to recruit 600 MS patients. They’re particularly interested in signing up patients whose gait is impaired. Half of the patients will take a capsule of MD1003 three times a day. The other half will receive a placebo. Investigators hope to show that using high-dose biotin (300 mg) will improve patient’s Expanded Disability Standard Scale (EDSS) score, or improve patients’ walking speeds by 20 percent on the 25-foot walking test. To be eligible to participate an MS patient must be: 18-65 years old Diagnosed with primary or secondary progressive MS Have had disability progression within 2 years prior to entering the study An EDSS rating between 3.5 and 6.5 A 25-foot walking speed of less than 40 seconds There are other, more detailed requirements. To see if you would qualify for this study, you can click here. IMPORTANT NOTE: Though the original information about this study said that it was being conducted in 70 centers, and they were located in North America and Europe, the number now enrolling patients is down to 30. They are located in the US, the UK, Germany and the Czech Republic. You can see a list of current study sites here. But, I’m too old Unfortunately, I’m a couple of years older than the upper cutoff age, so this study isn’t for me. But maybe it’s for you; I hope so, and I hope this study will lead to the approval of another weapon to add to our MS arsenal. (You’re invited to follow my personal blog at: www.themswire.com) *** Note:Ā Multiple Sclerosis News TodayĀ is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those ofĀ Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. Heās also the author of āThe Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.ā Ed and his wife split their time between the Washington, D.C. suburbs and Floridaās Gulf Coast, trying to follow the sun. Tags Biotin, MD1003, study Comments Share I am in the secondary progressive stage of MS.I was prescribed high dose medical grade compounded Biotin by my MS neurologist July 2016. I've been taking 300mg daily for over a year now. It has had no effect on my mobility or any other MS symptom. Reply Ed Tobias Hi Share, I'm very sorry to hear that but thanks for letting us all know. Ed Reply Kathy Allen Hi I understand that I meet the criterion, sec pr ms, under 65, no relapses, increasing difficulty with walkin. I live in Canada. There is/was a study that was to start in my city. I tried phoning several times to persons involved with the study & received no response. Therefore, tried to read as much as I could, had my dr review the studies to see if there might be any concerns. Tried to contact & had a response from one of the researchers as to how to start the biotin i.e. getting to the 300mg & I started in February '17. Will see how it goes. any comments? Kathy Reply katie. hanlon I cannot apply to find out about this study because I do not have a US ZIP code number so the web pagre refuses to allow me to submit an enquiry Reply Ed Tobias Hi Katie, Thanks for pointing this out. I just looked into it and I discovered that the web site needs to be updated. Though it says there are 70 centers conducting, looking at a list of the centers reveals that they are located in the US, the UK, Germany and the Czech Republic. I'm sorry that the original information I was given was inaccurate and I'm updating my column to make it clear that the site locations have been reduced. Ed Reply Gitta Hadfield Hi ! I fit the criteria and live in the UK. The form does not accept my post code or phone number . Frustrating !! Reply Ed Tobias Hi Gitta, I'm sorry you're having trouble. Perhaps the link that I included is only for the U.S. Why don't you try entering the web site address: http://spi2study.com? It might then identify you as being in the UK and serve up an appropriate page. Or, go to the list of testing centers and ring up one close to you in the U.K. Good luck, Ed Reply Alison That's the same for me. I am in the UK, and I'm interested in going to Newcastle. However, it won't accept a British post code when applying. Reply Jeffrey Lagomacini Thank you Ed for the article and making other MS'ers aware of the study! I am currently going through the admission process for the MD1003 study. at The University of Miami (FL), Miller School of Medicine. The admission process include a walking test, an MRI (with & without contrast), blood work, and a neurological test. It's a quite extensive process. I am hopeful that I receive the meds & not the placebo. I'll keep posting updates on this page as things progress...... Reply Ed Tobias Hi Jeffrey, Good luck to you. I was in the original double-blind study of Avonex and wound up with the placebo. Just the same, I'm glad I participated. (And, when the study ended they quickly put us all on the real stuff). Please keep us posted. Reply Diane What would I need to do to be considered? I can walk, but for very short distances. What is the side effects? Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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