Vanderbilt Kennedy Center (TN UCEDD, IDDRC, LEND) Member and ResearchMatch Developer Aims to Increase the Number of Participants with IDD in Research Studies
April 18, 2016
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ResearchMatch (www.ResearchMatch.org) is a national online platform promoting the completion of clinical trials by matching individuals willing to participate in research with investigators nationwide. The recruitment tool was created in 2009 by Paul Harris Ph.D., Professor of Biomedical Informatics and Biomedical Engineering; Director, Office of Research Informatics; and member of the Vanderbilt Kennedy Center (TN UCEDD, IDDRC, LEND).
"Since the system's inception, it has hosted more than 150 studies focusing on autism and intellectual disabilities," said Harris. "That's great and we want to continue matching volunteers to these targeted studies, but we also recognize that individuals are not defined by a single medical condition. People with autism and intellectual disabilities also deserve the opportunity to contribute and be represented in studies based on topics like diabetes, hypertension, sun exposure and the effects of too much screen time. We have been very intentional about not segregating our volunteers so that study matches can be made between any volunteer and any participating ResearchMatch partner institution. This opens the door and democratizes access to a very rich and diverse research portfolio - ultimately helping both volunteers and researchers".
The ResearchMatch mission is to empower patients and researchers by removing access barriers to participation. ResearchMatch is disease-neutral and institution neutral. More than 92,000 volunteers from every state, including 4,900 pediatric members and 3,600 researchers at 120 academic and non-profit research institutions are registered. In contrast to disease focused registries, ResearchMatch volunteer profiles include those with disabilities, multiple comorbidities, and healthy individuals. Because a volunteer is not segregated to studies targeting only their disability or disease, people are given the chance to express interest in a variety of studies that they might not have found out about otherwise.
Funded by the National Center for Advancing Translational Sciences (NCATS) as an innovative recruitment tool, the registry has been hosted and maintained at Vanderbilt University Medical Center, and has been highly effective. Ninety-nine percent of volunteers have been contacted with a study opportunity at least once and sixty percent of those have expressed an interest in learning more about study opportunities.
The success of ResearchMatch is attributable to the backbone of collaborating institutions that make up the network of sites including many IDDRC institutions. Designed as a resource to further enable and accelerate research collaboration, particularly for multisite studies, joining the network is offered at no cost but does involve signing a Master Registry Agreement, and supporting a local liaison. ResearchMatch seeks partner institutions and volunteers with and without disabilities to use and register with the recruitment tool to further the inclusion of individuals with intellectual and developmental disabilities in research.
How ResearchMatch Makes Connections
Volunteers and/or legal guardians register at www.ResearchMatch.org, and provide basic demographic information, and as much medical history as they choose. Volunteers are emailed information about IRB-approved studies where they can express interest in participating, and release their contact information to the researcher. Not required from volunteers, but included in the current total 92,000 registered, are more than 590 volunteers reporting autism spectrum disorders and 744 reporting intellectual disabilities. In 2013, Harris consulted with the Community Advisory Council of the Vanderbilt Kennedy Center UCEDD and other academic medical centers to create sub-registries (Condition Connections) within ResearchMatch for both intellectual disabilities and autism spectrum disorders. Volunteers in both groups are highly engaged and answer additional questions upon registering that help to fine tune the essential matching process.
Registered researchers on ResearchMatch first see aggregate data about volunteers, and by filtering by location, age, gender, BMI, race, ethnicity, twin, and veteran status, medical conditions and medication usage, they refine their list of potential participants and send study information to this cohort. In this way the number of cohorts identifiable is only limited by the eligibility criteria of the studies, allowing for broad variability across institutions nationally.
Features for Volunteers and the Public
Visitors can easily search for trials on the ResearchMatch Trial Finder page, a more user-friendly version of Clinical Trials.gov, and the information from CT.gov is provided to them with direct contact information for the study teams.
To return results back to the volunteers, Harris and his team now post the published manuscripts of studies registered with ResearchMatch on the Results Page and work with investigators to simplify and disseminate random publications for dissemination through social media platforms.
On social media and in the bi-monthly newsletter, ResearchMatch focuses on engagement and education, and seeks to de-mystify the process of being a research volunteer. These venues and the Network Page point the visitor to the ResearchMatch partner organizations as expert sources of education and support. Partner organizations include nonprofit patient advocacy groups and educational sources for volunteers.
"ResearchMatch provides a bridge to engage the public outside the walls of a researcher's academic medical center, reduces costs and time to completion, and also provides an avenue to share published manuscripts," said Harris. "For volunteers, ResearchMatch provides access to clinical trials and survey research delivered straight into their inbox as well as linkage to educational and support organizations. It's a powerful tool that has proven effective for inclusive recruitment across the spectrum of clinical and translational research studies."
Learn more at http://www.researchmatch.org/aucd
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