A volunteer spends time on the treadmill. Study volunteers can participate in research by doing as little as filling out an online survey or as much as taking an experimental drug.
A treadmill session is just one way that people can participate in research studies. They can also try a new diet, test investigational medicines, complete questionnaires, keep diaries or play computer games, just to name a few more.
A volunteer prepares for a treadmill session. Without such human participation, science would sputter out and stall. The North Carolina Translational and Clinical Sciences Institute (NC TraCS) helps researchers recruit and retain the research participants needed for clinical trials at UNC.
While in graduate school, Marla Vacek Broadfoot joined a cystic fibrosis study in which she got $10 to eat fresh jalapeno peppers for 12 straight minutes and then blow her nose into a jar.
Food portions are weighed in the dedicated kitchen of the UNC CTSA’s Clinical and Translational Research Center (CTRC). The facility provides thousands of meals a year for studies exploring dietary interventions for headache, eating disorders, cardiovascular disease and other illnesses.
Holden Trent looks like a typical 10-year-old boy – soccer jersey, blond hair, blue eyes – but he has Crohn’s disease, which makes life anything but ordinary. Last year Holden enrolled in a UNC clinical trial for a Crohn's therapy. He now feels better and is gaining confidence for school and soccer.
Volunteers keep science going
Marla Vacek Broadfoot’s first taste of research had a kick to it. A jalapeno kick, that is.
While in graduate school, she joined a cystic fibrosis study in which she got $10 to eat fresh jalapeno peppers for 12 straight minutes and then blow her nose into a jar.
“I figured I had already given my blood, sweat and tears to science, so why not add my snot?” Broadfoot said.
People who volunteer for research studies often do so for altruistic reasons, although some consider money a motivating factor. And for those afflicted with a hard-to-treat illness, clinical trials can be a way to get relief.
Having suffered from headaches since the second grade, Sarah Keeley jumped at the chance to participate in a clinical trial testing a new diet to prevent headaches. “My father always told me you can’t complain about something unless you have done everything you can to find a solution,” she said. “I can’t complain about my head hurting if I don’t try to fix the problem.”
For 12 weeks, she received prepackaged meals, dietary advice and access to a website with easy recipes and tailored shopping lists. Keeley didn’t begin to see any effects until toward the end of the trial, when she got fewer headaches and more energy. Though the results of the study are not yet public, Keeley is sticking with the diet and reaping the benefits.
Trying a new diet is just one way that people can participate in research studies. They also test investigational medicines, complete questionnaires, keep diaries and play computer games. Participation has benefits – free health assessments or medications, counseling sessions and access to cutting-edge treatments – but also poses risks. In many cases, participants may receive a placebo instead of the experimental treatment. And those who get the drug may experience side effects.
Without such human participation, science would sputter out and stall.
The North Carolina Translational and Clinical Sciences (NC TraCS) Institute is helping researchers recruit and retain the number of research participants needed to populate clinical trials at UNC. For example, it takes 5,300 to 5,600 patients to get enough data to file for a new drug application with the FDA. It also promotes Research Match, a web-based registry supported by the 60 institutions affiliated with the Clinical and Translational Science Awards (CTSA) — including NC TraCS.
Broadfoot, the snot donor, has signed up for Research Match to participate in more research. “I hope I will get the chance to contribute to science yet again,” she said, “though if I am asked to spend another 12 minutes downing hot peppers, I plan to say no.”