NIH created the Down Syndrome Consortium in 2011 to foster communication and idea-sharing among various stakeholders such as NIH, individuals with Down syndrome and their families, national organizations interested in Down syndrome and other professional groups.
One of its first activities was to create a Down syndrome registry, now called DS-Connect®: The Down Syndrome Registry. DS-Connect® is a powerful resource where people with Down syndrome and their families can connect with health care providers, learn about open clinical studies on Down syndrome and take confidential health-related surveys to advance Down syndrome research and medical care.
Parisi, Melissa A
The development of a research registry for Down syndrome (DS) was identified as a priority in the 2007 Down Syndrome Research Plan. With the support of the Down Syndrome Consortium, founded in 2011 as a public-private partnership between the NIH and DS advocacy organizations, NICHD awarded a contract in 2012 to create a patient-focused online registry to facilitate research participation by individuals with DS.
DS-Connect®: The Down syndrome registry is an online survey tool designed to collect demographic data and basic health information from individuals with DS.
The purposes of DS-Connect® are:
- To identify the various phenotypic manifestations of DS.
- To identify individuals with DS who may be eligible for research studies or new clinical trials, based on specific information about their diagnosis and health history.
For further information, email DSConnect@nih.gov