DS-Connect : The Down Syndrome Registry is a voluntary, confidential, online survey that collects basic health information about people with Down syndrome. This resource was launched by the National Institutes of Health with help from the Down Syndrome Consortium, a group of national and international organizations that focus on and support the Down syndrome community.
In early 2006, the Director of the National Institutes of Health (NIH) asked the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) to lead the formation of a Down Syndrome Working Group that would include scientists from across the NIH. The Working Group was charged with coordinating ongoing research already supported by the NIH related to Down syndrome, and to enhance new, NIH-supported research efforts.
The Working Group, with input from the outside scientific and family communities and at the request of Congress, created the NIH Research Plan on Down Syndrome in 2007 to focus on genetic and neurobiological research relating to the cognitive effects associated with the condition. The plan aimed to build upon ongoing NIH-supported research on Down syndrome, reflect the changing lives of families and individuals with DS, and take advantage of emerging scientific opportunities. One of their primary recommendations was to create a National Registry for people with Down syndrome.
After several years of working with scientific and family communities to achieve the various goals of the plan, the NIH created the Down Syndrome Consortium to foster communication and idea-sharing among NIH, individuals with Down syndrome and their families, national organizations interested in Down syndrome, and pediatric and other groups. One of its first activities was to create a Down syndrome registry, now called DS-Connect®: The Down Syndrome Registry.
There are two Boards that provide oversight for DS-Connect®. Their membership is listed on the DS Consortium website. The DS-Connect® Operations Board manages the day-to-day activities of the Registry, develops surveys, and makes decisions about access to Registry information. It also works with the DS-Connect® Coordinator ( DSConnect@nih.gov) to decide when to send out notices and other information. The DS-Connect® Governance Board makes decisions about policies and procedures that govern the DS-Connect® Registry.
If you have questions about the registry, please contact us at: DSConnect@nih.gov.