About the Down Syndrome (DS) Consortium

The DS Consortium includes the following members:

	NIH Down Syndrome Working Group Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) National Cancer Institute National Center for Advancing Translational Sciences National Heart, Lung, and Blood Institute National Human Genome Research Institute National Institute of Allergy and Infectious Diseases National Institute of Dental and Craniofacial Research National Institute of Diabetes and Digestive and Kidney Diseases National Institute of Mental Health National Institute of Neurological Disorders and Stroke National Institute on Aging National Institute on Deafness and Other Communication Disorders National Institute on Minority Health and Health Disparities
	American Academy of Pediatrics
	American Association on Intellectual and Developmental Disabilities
	Association of University Centers on Disabilities
	Alzheimer's Association
	Down Syndrome Affiliates in Action
	Down Syndrome Diagnosis Network
	Down Syndrome International
	Down Syndrome Medical Interest Group-USA
	Global Down Syndrome Foundation
	International Mosaic Down Syndrome Association
	Jerome Lejeune Foundation
	LuMind IDSC Foundation
	National Down Syndrome Congress
	National Down Syndrome Society
	National Task Group on Intellectual Disabilities and Dementia Practices (American Academy of Developmental Medicine and Dentistry)
	Self-Advocates
	Special Olympics International
	T21 Research Society

Melissa Parisi, M.D., Ph.D., NICHD Intellectual and Developmental Disabilities Branch (IDDB) Chief, serves as the chair of the Consortium. Sujata Bardhan, Ph.D., also in IDDB, is the executive secretary of the Consortium.

In early 2006, the NIH Director asked NICHD to lead the formation of a DS Working Group that would include scientists from across NIH. The Working Group was charged with coordinating ongoing research already supported by NIH related to DS, 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 dysfunction and progressive late-life dementia associated with the condition. The plan aimed to build upon ongoing NIH-supported research on Down syndrome, reflect the changing lives of the individuals and families affected, and take advantage of emerging scientific opportunities.

After several years of working with scientific and family communities to achieve the various goals of the plan, NIH created the DS Consortium to foster communication and idea-sharing among NIH, individuals with DS and their families, national organizations interested in DS, and pediatric and other organizations.

The Consortium meets two to three times each year to discuss research findings, potential collaborations, and progress in achieving the goals described in the NIH Research Plan. In 2014, Consortium members were actively involved in evaluating and revising the original NIH Research Plan to create Down Syndrome Directions: The NIH Research Plan on Down Syndrome (2014).

In addition, NICHD and other members of the DS Consortium launched DS-Connect^®: The Down Syndrome Registry to facilitate contacts and information-sharing among families, individuals with DS, researchers, and advocacy groups. The registry was paused in 2024 to migrate to a new platform. Consortium members will help promote the site’s relaunch and other outreach efforts with the DS community to encourage families to participate.

Many DS Consortium members are also active in the NIH INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) Project, which focuses on understanding the health needs of people with DS and their families. NIH launched the INCLUDE Project in 2018 to serve as an umbrella for coordinating DS research across NIH and the DS Consortium membership. The NIH DS Working Group, DS Consortium members, and organizations and agencies with an interest in DS contributed comments and input to the INCLUDE/DS Research Plan, published in 2020.