by Aviva Patz
Pros and cons of participating in clinical trials for MS research.
by Aviva Patz
Karen Jackson has been happily filling out surveys, giving extra vials of blood and undergoing MRIs and lumbar punctures for clinical trials since 2006. The 58-year-old from Alexandria, Virginia, was diagnosed with relapsing-remitting multiple sclerosis in 1996, then with primary progressive MS in 2003. “For me, it’s a no-brainer,” she says. “There aren’t a lot of treatment options for primary progressive MS. This is a way for me to continue to be part of the solution, part of the answer.”
Clinical trials are at the heart of finding new and better treatments for MS. They help scientists understand how MS develops and whether treatments—from disease-modifying therapies (DMTs) to rehabilitation strategies—are safe and effective. Participating has pros and cons, but one thing is certain: There can be no progress without it. “Everyone owes a debt of thanks to people who have participated in clinical trials, who have helped pushed the field forward, because all trials, even unsuccessful ones, teach us valuable lessons,” says Ari Green, MD, director of the MS Center at the University of California at San Francisco. “Everyone with MS has benefited because of the risk or the inconvenience of the people who came before them.” Read on to learn more about participating in clinical trials for MS and whether they’re right for you. Karen Jackson has been happily filling out surveys, giving extra vials of blood and undergoing MRIs and lumbar punctures for clinical trials since 2006. The 58-year-old from Alexandria, Virginia, was diagnosed with relapsing-remitting multiple sclerosis in 1996, then with primary progressive MS in 2003. “For me, it’s a no-brainer,” she says. “There aren’t a lot of treatment options for primary progressive MS. This is a way for me to continue to be part of the solution, part of the answer.”
How to find clinical trials
There are two main sources of MS clinical trial listings: One is the National Multiple Sclerosis Society website, which allows you to search for trials by state, type of MS or keyword. You can also check the website of the National Institutes of Health, where you can search more than 290,000 research studies in all 50 states and in 207 countries. Search by condition to find MS-related trials.
There are two main sources of MS clinical trial listings: One is the National Multiple Sclerosis Society website, which allows you to search for trials by state, type of MS or keyword. You can also check the website of the National Institutes of Health, where you can search more than 290,000 research studies in all 50 states and in 207 countries. Search by condition to find MS-related trials.
Details of trials
Studies can last from weeks to months to years or even the rest of your life, in the case of long-term research. Timing depends on the phase of the research, what it’s testing and other variables. How you participate will also vary widely—you might be trying an app, modifying your diet, taking vitamins or pills (including disease-modifying therapies), giving extra vials of blood or having extra MRIs, getting your skin biopsied, getting injections or infusions, or testing out different ways of walking, exercising or doing physical therapy.
Studies can last from weeks to months to years or even the rest of your life, in the case of long-term research. Timing depends on the phase of the research, what it’s testing and other variables. How you participate will also vary widely—you might be trying an app, modifying your diet, taking vitamins or pills (including disease-modifying therapies), giving extra vials of blood or having extra MRIs, getting your skin biopsied, getting injections or infusions, or testing out different ways of walking, exercising or doing physical therapy.
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