First Clinical Trial to Focus on Improving Hand Function in PPMS Patients Announced

First Clinical Trial to Focus on Improving Hand Function in PPMS Patients Announced

A new clinical trial will be the first in the world to recognize the importance of retaining hand function for wheelchair-bound patients with primary progressive MS (PPMS), according to a press release from Queen Mary University of London.

The international trial, which will be conducted by a research team from Queen Mary University of London, Barts Health NHS Trust, and Roche, will test if Ocrevus (ocrelizumab) can improve the ability of PPMS patients with advanced disability to use their hands.

Up to now, most MS clinical trials have focused solely on a patient’s walking ability as a measure of a potential therapy’s effectiveness, and they have often excluded patients who are already in wheelchairs.

In addition, although growing evidence shows that continuing treatment improves upper body function and quality of life in PPMS patients, the U.K.’s National Health System stops disease-modifying treatments for MS patients once they lose their lower limb function and have to rely on a wheelchair.

“Addressing the needs of people with progressive MS, who are typically more advanced in their disease course, is one of the major frontiers in MS research. Around a third of people living with progressive MS may already be confined to a wheelchair, so maintaining hand and arm function is essential for them to stay independent and lead active lives.” Gavin Giovannoni, PhD, lead researcher and a professor at Queen Mary University of London and Barts Health NHS Trust, said in the release.

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The trial will also be the first to use an arm, wrist, and hand function measure called the Nine-Hole Peg Test as the main outcome. In this test, patients are asked to take nine pegs from a container and place them one at a time into holes on a board as fast as they can. They are then asked to move them back to the container. Both the dominant and nondominant hands are each tested twice.

Expected to start by the end of 2018, the trial will enroll about 1,000 PPMS patients from multiple countries, including those with advanced disability and those in need of a wheelchair. The safety and effectiveness of Ocrevus in improving upper limb function will be assessed and compared with a placebo group.

“The ability to use my hands and arms is now very important for a multitude of reasons. Without them, I could not use a rollator, walker or mobility scooter,” said Patrick Burke, a patient with advanced MS.

Ocrevus — an immunotherapy developed by Genentech, a member of the Roche Group — was approved in the U.S. in March 2017, and in January 2018, in all 28 countries in the European Union, as a treatment for relapsing forms of MS and PPMS.

Its approval for PPMS was particularly significant because this form of the disease previously had no approved therapies. This profoundly disabling, progressive form of MS occurs in about 15 percent of the MS population worldwide.

“For a number of years, through our #ThinkHand campaign, we have been urging industry to conduct a study looking at upper limb function in people with advanced MS. We’re pleased that in collaboration with Roche, we will conduct a clinical trial that uses hand function as a primary outcome for the first time,” Giovannoni said.

9 comments

  1. Connie Hage says:

    Very happy you are trying to help us who are advanced. All I read about in journals are about people that are trying not to be like me. I am already advanced and in a wheelchair!
    Help us regain our hand use. Thanks,

  2. Amy Penszynski says:

    I hate that peg test…they make it so slippery that even someone with “normal” hand functioning can’t even grab those things quickly… There’s seriously nothing better than a peg test???

  3. Rhonda Danielson says:

    as someone who has used their hands for years to communicate and who now has PPMS, I am continually shocked, and angered, at what able bodied people and the medical community think important to the less able folks.

    I am grateful that someone is finally! looking at hand function and at PPMS. But yet again they have it only partially right. The ability to operate a wheelchair, even a powered wheelchair, independently is hugely important, but they are missing the one basic function that surpasses even that in maintaining independence, self dignity and quality of life.

    The one function that each of us spent years fighting for and is as necessary to survival as breathing—the ability to feed ourselves.

    You need functionality/mobility/dexterity to pick up with your fingers a piece of bread or a grape or a chicken leg. You need even more to use a fork or a spoon and yet more to use a knife.

    If you truly want to understand the value of hand function, get a pair of gloves that ice hockey players use and live in them for a month. And I mean live-eat, drink, drive, get dressed, type, write, cook, everything. Odds are you won’t make it a week.

    Like I said, I am grateful that hand mobility is finally being considered “important” enough to study but also vert disheartened that until recently it wasn’t considered important enough to study.

    Since I believe in being part of the solution instead of part of the problem, like John, I would like to know how does someone in the US participate in this study?

  4. Sharon Main says:

    I was diagnosed in March 2016 with PPMS. Within 6 months I was in a wheelchair. The last 6 months I have experienced the weakening of my hands & arms…unable to fix my hair & great difficulty trying to apply makeup. I try very hard to keep my strength in my hands & would be interested in any trials.

  5. Mara Rost says:

    I was diagnosed with PPMS in 2006. Although both my arms and legs are affected, my right side extremities are much more so. The problem with this trial is both gross and fine motor muscles of my right hand and arm are affected. I have severe writhing, wild movements for all intention with tremoring. My fingers will freeze and lock too. I can’t eat,write, do hygiene etc. because I’m right handed. So how would this test measure all this disorder of movement? I have been fôrced to become a lefty. But I still walk & drive.

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