Those Considering a Trial
The people we interviewed had suggestions and advice for others thinking about participating in trials.
Consider Joining a Trial
Many people wanted to encourage others to join clinical trials. Jean pointed out that participating in clinical trials “help[s] [researchers] with discovering resources that could potentially help all of us and/or help [study participants].” Elaine said being in a clinical trial is “on the cutting edge.” Fred remarked that “it’s nice to help your fellow man” and suggested thinking about participating in a trial even if there might be some “negative parts” associated with it. Debra N. urged people to stay in the study until the end, if possible, because “then they can actually get some information from you and use it.”
Debbie encourages people to participate in clinical trials to help future generations.
Debbie encourages people to participate in clinical trials to help future generations.
It's on us. It's on us to do this. It's for our future children, grandchildren, and generations to come. I mean, how else are we ever going to find out how to reduce symptoms, what's working, what's not working, God forbid, find a cure? And if we don't participate, the chances are diminished. So, I would encourage everyone to participate.
Dani urges people to join trials.
Dani urges people to join trials.
Hopefully to tell people like me, like old me, like years ago me, that don't stop. Do the trial. Help out. Don't let anyone take away what you want to do, what you feel you need to do. Whether it's a trial for a drug that you think might help you, or this kind of trial of sharing.
Dina says it is important that trials have input from diverse people.
Dina says it is important that trials have input from diverse people.
If they were comfortable to wholeheartedly participate, because it's the only way we continue to allow researchers options for what kind of research they can do, and have a larger sampling, because my experience and my background and who I am as a physical individual, as an entity, is very different than another person. So, having that input, I think, is really valuable.
In encouraging others to join trials, several people we talked to also described ways participating in a trial could be beneficial. Debra C. suggested that people look for trials that fit with what they like to do. Susan described how she found participating in trials to be “a learning experience.” Debra C. encouraged people to “go for it” and not be afraid. Alejandro pointed out that all trial participation is voluntary and Jim reminded people that they can quit at any point if they “get cold feet for any reason.”
Jennifer A. advises people to join trials that are a good fit for them.
Jennifer A. advises people to join trials that are a good fit for them.
I think my best advice for people participating in clinical trials is finding the clinical trials that fit your lifestyle, finding the ones that are easy for you to do, that align with the time that you have to participate in it, and just asking the questions. If you ever have any questions of, “Hey, what are you trying to test? What are benefits you want to have?” If you have concerns along the way, or just suggestions of, “Hey, you’re doing this, but I think this would be more helpful for people like me.” Just being an active participant, forming that relationship with your research team, whoever you’re in contact with, it’ll really help you have a great result. And honestly, I’ve enjoyed most all the clinical trials I’ve done, and they’ve honestly been enjoyable for me. I’ve learned a lot, personally.
Jim says don’t worry about being in the control group.
Jim says don’t worry about being in the control group.
I didn’t really have a lot of worries about the clinical trial because I understood how they worked. So, I can tell you, though, that I know that a lot of people worry about them. And I know that because of discussions I’ve had with them in questions and answers, because like I said, I used to advocate for people to do clinical trials. You know people worry that they’re going to be—I think one of the main things is people worry that they’re going to be put in a control and not know it. If it’s testing a medicine, that they’re going to be put in—taken off their medicine and not know it, right, and so they’re going to get worse. But what I think–what I know people don’t understand and what I try to make clear to them is that that’s not ethical to do. You can’t do that. If it’s an FDA-approved treatment, if it’s a standard of care, you have to at least be on that. Right, we’re not comparing that versus nothing. We’re comparing this versus the standard of care. So, I always—you know, I think that’s one of the big concerns is people are going to be a control, and so, in their mind, that means that they’re going to be taking off my meds. Well, if your meds are prescribed to you and that’s you know whatever, it’s a standard of care, you’re not going to be taken off your meds. You might not know which one you’re getting, but you’re not going to be taken off of them.
Ask Questions and Make Sure You’re Comfortable
People we interviewed encouraged others to ask questions, think about practicalities, and make sure that they are comfortable with the trial. Liz commented that people need to be “comfortable with the information and the way the study is being handled.” Debbie and Fred both pointed out that participating in trials is much easier if the location of the facility is convenient, particularly if the study takes place over a long period of time. Jennifer A. encourages people to ask questions about why the study is happening and what has been found out so far. Mercedes emphasized that she thinks that patients “have a duty to read” the materials that they are given about the trial so that they can ask questions of the research team.
Kara urges people to do research about each trial and make sure they are comfortable joining.
Kara urges people to do research about each trial and make sure they are comfortable joining.
I say if you have a chance to do a clinical trial, make sure you really—make sure you’re comfortable with it. I had to make sure I was comfortable with the medicine, and I looked into it—just don’t sign papers and go. I really invested in, because this is an unknown medication that’s not FDA approved that you’re putting into your body. I feel like, you know, you really need to invest in figuring out what side effects could occur and getting to know what labs to look for with that. Like, what are the critical—like IGM, I knew that was my critical lab. So, just kind of—don’t just sign and go. Really invest in looking for, looking at that medicine. You know, I’m glad you trust your neurologist; however, you shouldn’t just do something willy nilly.
And if you do go into, say, a clinical trial, read the paperwork, read the articles, call the company, invest in stuff—you’re putting this into your body, that is not FDA approved. You need to make sure that you are comfortable, everybody’s comfortable, and that’s what they are here for. That’s what your neurologist is here for. That’s what the company is here for—is to answer those questions. And don’t be afraid to ask them. And be honest with your neurologist, you know, like if you are having symptoms, or if you’re not sure if they’re symptoms. Make sure you ask and make sure you bring that up. That’s what they’re there for. If you’re, like—whenever I wasn’t sure if I was having a relapse or not, I went to my neurologist, we talked, I got blood work because I wasn’t sure. And that was OK, because I didn’t have a relapse.