A first-of-its-kind national registry is in the works to help connect people with Down syndrome and researchers studying the chromosomal disorder.
The database, which is being established by the National Institutes of Health, will offer individuals with Down syndrome and their families a secure website to enter their contact details and health information so that they can connect with researchers to participate in studies.
The platform will also allow participants to confidentially compare their experience with that of others who have the developmental disability, NIH officials said.
The idea to establish a registry emerged from the NIH’s 2007 Down Syndrome Research Plan. It is also supported by members of the agency’s Down Syndrome Consortium, which includes self-advocates, family members, federal officials and leaders from advocacy organizations.
“The new registry provides an important resource to individuals with Down syndrome and their families,” said Yvonne Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is funding the effort. “The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research.”
NIH has contracted with PatientCrossroads, a company that’s established similar registries for those with muscular dystrophy and other conditions, to create the new database.