An MS Study You Might Want to Join

An MS Study You Might Want to Join

MS_Wire_Ed_Tobias
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)

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Note: Multiple Sclerosis News Today 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 of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
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Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

11 comments

  1. Share says:

    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.

  2. Kathy Allen says:

    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

    • Ed Tobias says:

      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

      • Gitta Hadfield says:

        Hi ! I fit the criteria and live in the UK. The form does not accept my post code or phone number . Frustrating !!

        • Ed Tobias says:

          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

    • Alison says:

      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.

  3. 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……

    • Ed Tobias says:

      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.

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