ResearchMatch, a national on-line volunteer recruitment service hosted by Vanderbilt University, has launched a sub-registry for autism spectrum disorders (ASD) to increase the participation of children and adults with autism in clinical research studies.
Only 5 percent of children with autism in the United States participate in research trials, compared to nearly 90 percent of children with cancer.
Many parents simply don’t know about studies that could benefit their children, explained Blythe Corbett, Ph.D., a pediatric neuropsychologist and assistant professor of Psychiatry at Vanderbilt who helped create the sub-registry.
Corbett directs the Social-Emotional Neuroscience & Endocrinology (SENSE) Lab in the Vanderbilt Kennedy Center for Research on Human Development.
Although the sub-registry was just launched last month, it already has identified potential volunteers in the Nashville area who previously enrolled in ResearchMatch and who would be a good “match” for studies under way in her lab, Corbett said.
To enter the sub-registry, potential volunteers or their family members enter the ResearchMatch website (www.researchmatch.org) and click on ASD from a list of medical conditions that may affect them.
They will then be asked to answer five questions: when they or their family member were diagnosed with ASD; what symptoms they have; ways they communicate; whether any siblings have developmental disabilities; and what kinds of studies they are interested in.
Volunteers will be notified by email of studies that best “fit” their answers. They can then contact the researchers if they’d like more information or are interested in participating.
The questions were developed using a novel focus group approach designed by ResearchMatch program manager Laurie Lebo, Ph.D. The focus groups included volunteers, family members and researchers from across the country.
Sub-registries for other medical conditions are now being developed, said Paul Harris, Ph.D., who led the team in the Vanderbilt Institute for Clinical and Translational Research that designed ResearchMatch and who directs the program.
“We built ResearchMatch as a disease-neutral registry to help individuals from anywhere in the country connect with research teams at participating institutions,” he said. “Now we’re taking the project to the next level by offering additional services for potential volunteers who register with one or more specific medical conditions.”
“Automated person-specific dashboards allow registrants to see how they compare with others who report the same conditions,” said Harris, associate professor of Biomedical Informatics.
They also can suggest ideas to the researchers.
This week, ResearchMatch kiosks will be set up around the Medical Center, Vanderbilt Health One Hundred Oaks and Vanderbilt clinics in Williamson County as a pilot project to increase community awareness and encourage more volunteers to participate in research studies. Later this year, additional kiosks may be installed throughout the community, Lebo said.
ResearchMatch was launched in 2009 as a project of a consortium of medical centers, including Vanderbilt, which received Clinical and Translational Science Awards (CTSAs) from the National Institutes of Health (NIH).
Since then, nearly 32,000 volunteers nationwide have joined the registry, and 1,460 researchers at 76 different institutions participate in the program.
ResearchMatch is funded in part by NIH CTSA program grants UL1TR000445 and 1U54RR032646.