According to Tufts University, 37 percent of research sites do not meet their enrollment goals for scientific studies. But enrollment is critical to clinical research and uncovering potential treatment advances.
Jennie Latson, a 39-year-old from Houston, TX, has battled the pain and burden of migraine for more than 25 years. Her relentless quest to find relief led her to a clinical trial in August 2018, which changed her life.
Below, Jennie talks about her experience with clinical trials, what to expect as a participant, and why enrollment is important.
Q: How did you find out about this particular clinical trial?
A: I’ve been a regular on the migraine clinical trial circuit for the past 15 years or so. I keep an eye on the NIH clinical trials website to see if there are any new studies that look promising — and if they’re recruiting participants near me. In this case, I actually got a call from a lab here in Houston, the Texas Center for Drug Development, which was conducting a migraine clinical trial for an investigational acute treatment. I had participated in a different migraine study there previously, and they asked if I’d want to try this one. I like to think I am one of their VIP patients: I get a lot of migraines, so I produce a lot of data.
Q: Have you participated in other clinical trials?
A: I think I’ve done a half-dozen trials at this point. In all but one, the drug had no effect whatsoever. In one, I experienced vertigo so intense I couldn’t move my limbs for several hours. Which was, obviously, terrifying. I dropped out of that study, but I’ve done others since then.
Q: What were your expectations going into this most recent clinical trial?
A: My expectations were low, based on my previous experiences. One thing I did think was promising was that this was an entirely new class of drug, designed specifically for migraine. Every previous drug I’d tried was an existing drug originally designed for a different condition — depression, epilepsy, high blood pressure, etc. — and repurposed for migraine. So that’s partly what motivated me to try it, but I wasn’t expecting much, because my migraine attacks had so stubbornly resisted every other treatment I’ve ever tried.
Q: Would you recommend other people with migraine participate in a clinical trial? Why?
A: For a long time, it seemed to me that migraines weren’t getting as much attention as other medical conditions, even ones that weren’t as disabling or affected fewer people. So I felt like if anybody was doing research, I wanted to help them get good data. And because every person with migraine is different, it’s important to get as many of us as possible into these trials to see how a treatment works for the whole spectrum of sufferers.
Q: How should people with migraine prepare to participate in a clinical trial? What tips do you have?
You are taking a risk. It’s always possible that an experimental drug will make things worse instead of better. Don’t be afraid to drop out at any point if you’re uncomfortable. That’s data, too. Every trial helps build the body of knowledge about migraine: Knowing what doesn’t work can help researchers determine what does. And one day, you may find yourself in a trial with the drug that will change your life — and the lives of millions of others.
Jennie is a former newspaper reporter, most recently at the Houston Chronicle. Her work has appeared in the Wall Street Journal, the Boston Globe, Time, Psychology Today, and other publications. Jennie is also the author of “The Boy Who Loved Too Much,” a nonfiction book about a genetic disorder sometimes called the opposite of autism. She currently serves as the editor of Rice Business magazine, the alumni publication for Rice University’s Jones Graduate School of Business.
This post is sponsored by Biohaven Pharmaceuticals.