ResearchMatch database includes sub-registry for rare sarcoidosisOct. 23, 2014, 10:35 AM
ResearchMatch, a national online medical research volunteer recruitment service hosted by Vanderbilt University, has launched a sarcoidosis sub-registry to increase the participation of people with this rare chronic condition in clinical research studies.
It’s estimated that in the United States there are some 40 patients diagnosed with sarcoidosis per 100,000 people. The condition is characterized by the growth of collections of inflammatory cells, most commonly in the lungs, lymph nodes, eyes and skin.
All ResearchMatch volunteers who self-report as having sarcoidosis will be prompted to answer additional questions to enhance the matching of volunteers with research teams who are studying this condition.
Launched in 2009 by a team at Vanderbilt, ResearchMatch is the first nationwide, disease-neutral research volunteer registry.
More than 67,000 volunteers spread among all 50 states have registered with ResearchMatch.org. Some 2,200 researchers from 97 participating institutions are currently recruiting ResearchMatch volunteers for more than 388 studies.
To gain precision, in early 2013 ResearchMatch began adding volunteer sub-registries. To establish a sub-registry, ResearchMatch works with researchers, patients and patient advocacy groups.
First came a sub-registry for autism, followed by HIV, intellectual and developmental disability, eosinophilic esophagitis, postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos syndrome.
Sub-registries are in development for food allergy, early onset Parkinson’s disease, sickle cell disease and more.
For more information, visit ResearchMatch.org.