CTSI Makes Health Research Participation More Accessible
When Marva Louisville heard a colleague say that his wife is currently exploring whether or not exercise affects dementia, Louisville’s ears perked up. Her sister has Alzheimer’s disease, and Louisville is concerned about one day getting the same diagnosis. Louisville, who didn’t have a regular exercise routine, knew this opportunity was too good to pass up. By participating in the study she would receive the motivation and supervision she needed to begin an exercise program while helping further scientific research that could actually benefit her. Louisville eagerly signed up.
Connecting people to research studies is not always easy. But thanks to the University of Miami’s Clinical and Translational Science Institute (CTSI), there is now a website offering virtual, one-stop-shopping for all health research studies conducted at the University of Miami. The new website, UMiamiHealthResearch.org, was launched last fall and currently features more than 120 health research studies in need of participants.
The goal of UMiamiHealthResearch.org is to solve a common problem among researchers: finding participants to conduct their study. This challenge has only become more difficult during the COVID-19 pandemic. While some studies find participants through doctors who refer their patients, many studies also, or only, require healthy participants. Often, researchers spend a great deal of time and resources to secure those healthy participants.
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“In my research, we’re studying how regular physical exercise can change the thinking abilities, metrics of neurophysiology and brain function, and cardiovascular function in aging adults who are sedentary,” said Joyce Gomes-Osman, PT, Ph.D., an assistant professor in the departments of Physical Therapy and Neurology at the Miller School of Medicine.
“We’ve worked hard to engage with people who are at least 55 years of age and sedentary. I’ve given lectures about my work, we’ve put fliers up around the university, reached out to friends and family, and used an app to find participants. It’s not easy to find them,” Gomes-Osman continued. “We’re really excited to use UMiamiHealthResearch.org to make people aware of the research around them and how they can be a part of it.”
“One of the biggest challenges our clinical researchers face is the recruitment of participants into trials. The Miami CTSI is innovating and leveraging technology to reach a larger, more diverse group of people who want to take part in research studies that can lead to new cures and treatments,” said Carl Schulman, M.D., Ph.D., MSPH, FACS, co-director of the CTSI Participant and Clinical Interactions Program.
“The UMiami Health Research website is the result of the CTSI’s investment and commitment to improving participant recruitment. It is the culmination of two years of hard work developing a platform that gives researchers the tools and support they need to promote their studies and connect with a pool of people who are interested in participating in research,” Schulman explained.
Before UMiamiHealthResearch.org, study descriptions were often full of medical jargon and scientific terms that were not easy for the average person to understand. To make research participation accessible to everyone, regardless of age or level of education, studies are listed using lay-friendly language. In other words, no one needs substantial medical knowledge to learn what a study is about and what participation requires.
The website is also easy to navigate. Users can search for studies by keyword or by topic, such as studies for healthy men or women, studies that can be done from home, COVID-19 studies, or other health categories. To receive personalized study recommendations, potential participants can sign up for the registry, answer a few questions and receive notifications of studies that are a good match.
There are numerous reasons to participate in a health research study, including personal benefit. For Louisville, a south Miami resident who is 59 years old, participation in Gomes-Osman’s exercise study resulted in two benefits.
“I thought that if Alzheimer’s is genetic, then I want to prevent or slow down any decline in my cognition as I age,” she said. “I also wanted to become more active. Now, I feel stronger, and my knees and heart are better. I can squat down and pick things up. My body is physically better from the exercise.”
Healthy individuals without any medical concerns are also encouraged to sign up on the website because most studies and trials require participants who don’t suffer with the specific condition being researched. These healthy participants help researchers compare or determine the benefits of their
treatment. In some cases, these participants may also find benefits to being a part of research.
University of Miami Miller School of Medicine professor emeritus Bob Warren, Ph.D., is currently participating in a dry eye study even though he doesn’t suffer from the condition. The study is giving him the opportunity to explore a major concern in his home.
“I’ve been curious about how much mold is in my house,” said Warren. “When I heard about this study, I thought it would be interesting because they conduct an air quality assessment on participant’s homes at the beginning and end of the study. They’re looking for all of the potential contaminants that could cause dry eye. Then, they installed an instrument in my kitchen to measure the air quality, including elements like humidity, carbon monoxide, lung irritants, and mold. The assessment showed a pretty high level of mold spores in my home.”
Not all health research studies require extensive participation or are invasive. Warren answers a weekly questionnaire about any dry eye problems he may have, if he’s taking allergy medication, and if his allergies have become worse.
Louisville participated in three Zoom exercise sessions per week for eight weeks, all supervised by a team member from the study. She completed physical assessments and answered questions to determine her cognitive ability at the beginning and end of the study.
Some studies may compensate participants for their time, but all studies benefit scientific advancement.
“We can’t promise people that they’ll benefit from the research,” says Gomes-Osman. “If we promise a benefit, then that would be a treatment, not research. But as the granddaughter of someone who passed away with Alzheimer’s disease, I hope people will participate. Because one day, my research results may help someone else’s grandpa slow the progression of their disease.”
If you would like to participate in a health research study at the University of Miami, visit UMiamiHealthResearch.org.