ResearchMatch sub-registries add to database’s reachOct. 3, 2013, 10:38 AM
Launched in 2009 by a team at Vanderbilt, ResearchMatch is the first nationwide, disease-neutral research volunteer registry. More than 43,000 volunteers spread among all 50 states have registered with ResearchMatch.org.
Nearly 1,800 researchers from 84 participating academic institutions are currently recruiting ResearchMatch volunteers for more than 350 studies.
First came a sub-registry for autism, followed in May by HIV; a sub-registry for intellectual and developmental disability was added in August; September saw the addition of sub-registries for eosinophilic esophagitis, Ehlers-Danlos syndrome and postural orthostatic tachycardia syndrome (POTS).
Sub-registries are now in development for food allergy, sarcoidosis, early onset Parkinson’s disease, a dental sub-registry, sickle cell disease and more.
To establish a sub-registry, ResearchMatch works with researchers, patients and patient advocacy groups. When volunteers indicate a sub-registry condition in their health profile, they are invited to respond to optional prescreening questions that help support more precise research matching.
“ResearchMatch.org will make a dramatic difference in accelerating HIV cure research by connecting researchers with volunteers who want to help but don’t know how to get involved or where to turn,” said Nelson Vergel, director of the Program for Wellness Restoration, a patient advocacy group.
Patient organizations have helped promote participation in ResearchMatch sub-registries by their communities.
When the POTS sub-registry was launched in September, ResearchMatch had managed over the previous four years to garner some 140 research volunteers who suffer from this syndrome.
Within a few days of the sub-registry launch, the number had leapt to 290.
“I hope that ResearchMatch will catalyze our research,” said POTS researcher Satish Raj, M.D., MSCI, associate professor of Medicine and Pharmacology at Vanderbilt.
Design and development of ResearchMatch is led by Paul Harris, Ph.D., research associate professor of Biomedical Informatics and Biomedical Engineering, and Kathy Edson, program coordinator, Vanderbilt Institute for Clinical and Translational Research.
For more information visit the ResearchMatch website.