Summary: In a recent survey of the MyMSTeam community, 85% of respondents said they’d want MyMSTeam to notify them of upcoming clinical trials in MS that may be relevant to them. While the overall interest in trials is strong, awareness and actual participation is relatively low. 74% report that their doctor has never talked to them about participating in clinical research for new MS treatments. See below for full survey results, and what we at MyMSTeam are doing to help our members learn about trials that could be relevant to them.
According to the National MS Society,
“Researchers across the country are searching for people living with MS who are willing to participate in clinical trials of experimental therapies. Clinical trials help to determine whether a new drug is safe and effective. Without people living with MS who are willing to serve as volunteers in these studies, we could not look forward to new and better therapies.”
Since we launched MyMSTeam.com in the spring of 2013, we’ve seen the the community grow and thrive in support of one another. Many of you have expressed a desire to have greater access to clinical trials in MS that would be directly relevant to your specific diagnosis and symptoms. At the same time, we’ve been approached by companies that research new MS therapies through clinical trials, who want to partner with MyMSTeam to get the word out about their respective trials to those who might qualify. We wanted to know how our members would feel about such a partnership, so we conducted a survey to find out how people on MyMSTeam felt about clinical trials. The results were clear and summarized well with one question in particular:
People participate in clinical trials for a number of reasons including: to receive cutting-edge treatments that may become standard therapy in the future, to gain access to experimental drugs or procedures when standard therapies are no longer effective, and to contribute to medical research that may benefit future generations. There is strong interest and willingness to participate in MS trials in the MyMSTeam community.
“If you were asked to take part in a clinical research study for MS patients like yourself, how likely would you be to participate?“
59% responded that they “definitely” or “would probably” participate if asked. That said, only 22% of respondents report having participated in a medical research study so far. While that figure is actually relatively high compared to the average clinical trial participation rate for all chronic conditions in America (about 6%), it is much lower than the real appetite by the MS community to engage in clinical trials.
One reason is low awareness.
“Has your doctor ever talked to you about participating in clinical research for new MS treatments?”
More than 7 out of 10 respondents (74%) said “No”, their doctor had never talked to them about trials for new MS treatments. Another 26% of respondents said they “don’t know” whether they could participate in MS trials if they wanted to. But there are other complicating factors as well. Some are concerned about switching from a therapy that seems to be working for them already:
“My only concern would be how taking new drugs would impact my current drugs which seem to be keeping me stable.”
“I would not do anything that required I stop or change my medication right now. So the trials would have to be for my current treatment.”
Others are concerned about the potential risks or side effects of new drugs, not yet approved by the FDA. 36% of those people hesitant to consider joining a trial cited safety concerns.
It’s possible that if you participate in a clinical trial, you will receive either the standard of care—the most effective known treatment available—or a promising, experimental treatment. In some trials, it is possible that you may be in a “placebo” group where you do not receive the actual medicine being tested. Presuming you get the experimental therapy, you may personally benefit if the treatment is found to be better than the current standard of care or placebo. But it’s also possible that the new treatment may not be better than the standard of care. Or, the researchers may find that only select groups of people benefit from the new treatment, and you may, or may not, be one of those people. As many people mentioned in the open-ended comments, it is always wise to consult with your doctor before starting a trial.
“I am interested but I would have to know the risks and clear it with my family and my doctor.”
“I am not averse to trials per se, but of course would consult with my neurologist before making any decision to [join] one. I trust his opinions a lot.”
MyMSTeam cares about empowering people with MS. In the coming weeks and months, we will test out partnering with the leading pharmaceutical companies conducting research in multiple sclerosis in an effort to make sure our members hear about trials that may be relevant to them. As always, we put your privacy first and never share your personal information with other companies, unless you explicitly tell us to do so. We will learn about trials from partners and let you know about the ones that could be relevant to you. And for those interested, there will be an easy and voluntary way for you to express interest in participating in those trials.
Anyone diagnosed with multiple sclerosis and living in North America can join MyMSTeam for free and hear about these trials as we message them out. Because of the positive response we saw from the survey results, we feel confident that the overall community will be excited about this. As we begin to share information on trials in MS, we look forward to hearing more feedback about this topic from you. And we are always interested in hearing other ideas you may have for how we can leverage the strength of MyMSTeam to empower our members.