Matchmakers for research
Photo by Ashley Barnas March 07, 2023
UD partnership with national network brings new possibilities for volunteers, researchers
You don’t have to be a doctor or a research scientist to contribute to important advances in medicine and healthcare. Millions of people around the world do it every year, unsung heroes who voluntarily participate in research with no fanfare or public acclaim.
Anyone can participate in research, providing critical information to investigators and helping to lay the groundwork for better treatments, new discoveries and much future progress.
“Everyone wants a treatment for their problem,” said Karin Grävare Silbernagel, director of the University of Delaware’s Center for Human Research Coordination and professor in the Department of Physical Therapy in the College of Health Sciences. “Volunteers can be heroes by being part of the research.”
While there is plenty of research underway at UD and around the nation, matching researchers with willing volunteers who meet the criteria for specific studies has always been a challenge, Silbernagel said.
Now a new partnership can make the process work better and faster. UD has joined ResearchMatch, a national registry established more than a decade ago by Vanderbilt University that helps researchers find appropriate volunteers for their clinical and translational studies.
UD’s Center for Human Research Coordination, established in 2021, already had a portal linking volunteers to a broad swath of UD-based research. Now it offers a national on-ramp, expanding the pool and diversity of potential research participants and broadening the opportunity for advances that might not otherwise come about.
As a researcher herself, studying tendon and ligament injuries, Silbernagel knows the challenge of finding good candidates for studies. Bulletin boards in clinics can only take you so far.
“You start with a flier, and you put it up on the wall with the little tags and the phone numbers and you realize that you need to have a broader reach,” she said. “You’re only getting the participants where you put them up and you tend to put fliers up where you're comfortable, which means you're getting mostly people that you already know, people that are like yourself. Diversity has been a big issue.”
Volunteers from diverse populations are needed for scientists to determine if promising new treatments or vaccines are effective and safe. Healthy volunteers are needed along with those who have specific conditions.
Volunteers from many backgrounds were essential to accelerating the development and production of COVID-19 vaccines, for example.
“If we didn’t have those people who volunteered, we’d all still be stuck in our homes,” said Marlo Goss, business administrator for UD’s CHRC. “It takes a special person to be part of something they really don’t know anything about. It’s because of those brave and gallant volunteers that all who want to be vaccinated are vaccinated and safe now.”
There can be many benefits for volunteers, too, Silbernagel said.
“In one of the research studies I'm doing, treatment is provided as part of the study, and treatment is for free,” she said. “There are other people that are studying diseases that are not that common. And it might be hard for people around the country to find the study, to learn more about their own disease.”
UD has a lot of exciting research underway, Silbernagel said, including areas such as nutrition, sleep health, cardiovascular health, stroke, musculoskeletal injuries and Parkinson’s disease, to name a few.
But Delaware does not have a medical school, so researchers sometimes have greater difficulty finding participants for their studies. UD’s new CHRC was designed to help with that, providing new recruitment tools as well as assistance with scheduling volunteers and managing data.
“We want to help researchers concentrate on what they’re really good at and let us concentrate on what we’re really good at,” Goss said. “It takes a lot of the burden off the researchers.”
The link with ResearchMatch adds significant muscle. The registry gets much of its support from the National Institutes of Health (NIH) and to date has drawn more than 144,000 volunteers and more than 12,000 researchers, who represent more than 1,200 studies and more than 200 institutions. Their studies have produced more than 600 publications.
UD’s partnership with ResearchMatch started in May 2022. As of October, 2,396 participants had registered within a 50-mile radius of UD, 22 researchers had registered studies, five were actively recruiting volunteers and 12 feasibility studies had been supported.
How it works
Researchers who wish to be part of the network must have approval from their Institutional Review Board, ensuring they have followed all protocols for research that involves humans before they submit their project to ResearchMatch.
For volunteers who want to be considered for studies, it’s easy to register and there is no fee. Enrollment takes about 10 minutes. You create your profile online, submitting as much information as you wish, then watch your email inbox for information about studies that may be relevant to you. If you see studies you’d like to be part of, you respond and the researcher contacts you to continue the conversation. You can change, update and/or delete your profile information at any time.
Those who register have access to other benefits. Volunteers and researchers can see studies that are underway and can learn a lot about various conditions. Researchers looking for grant support can demonstrate the feasibility of a new study by showing funding agencies how many potential volunteers fit the criteria for their study.
The network increases the reach of research, too. Telehealth studies and surveys allow researchers to connect with patients and subjects from all over the United States, without requiring extensive travel. ResearchMatch now is bilingual, offering its benefits in Spanish as well as English.
Data security and privacy are important commitments by ResearchMatch administrators and the ground rules are firm. ResearchMatch does not release personal information to any participating organizations or third parties. Researchers only contact you if you have expressed interest in being contacted about a specific study.
Researchers do not know the identity of potential participants at first. They can only see whether they fit the criteria of a given study. Only if a participant expresses further interest does the conversation get more specific.
Goss urges anyone interested to register for studies. She is in the ResearchMatch registry and finds it fascinating and useful.
“I do two or three studies a week,” she said. “People from across the country are contacting me about their research. Some have really been interesting. I’ve done a COVID study, women’s studies, women-with-children studies, people who exercise.
“Everybody I talk to about it is excited about it.”