National Institutes of Health Research Plan on Down Syndrome - Softcover

In early 2006, National Institutes of Health (NIH) Director Dr. Elias Zerhouni asked the National Institute of Child Health and Human Development (NICHD) to take the lead in gathering together program scientists from across the NIH to form a Down Syndrome Working Group. The charge to this group was to coordinate ongoing research already supported by the NIH related to Down syndrome, and to enhance new, NIH-supported research efforts based on identification of areas of greatest scientific opportunity, especially as they relate to the development of future treatments. This plan was developed by the Working Group, with input from the outside scientific and family communities, at the request of Congress in the Labor-HHS-Education Appropriations legislation for fiscal year 2007 (see Appendix B), focusing specifically on genetic and neurobiological research relating to the cognitive dysfunction and the progressive late-life dementia associated with Down syndrome. The purpose of the plan is to build upon ongoing NIH-supported research relating to Down syndrome to reflect the changing lives of individuals and families affected, and to take advantage of emerging scientific opportunities. By organizing the research objectives into groupings according to subject area and timeframes, the plan will also serve to apprise the Down syndrome community of NIH’s goals for moving ahead in this area, fostering collaborations between NIH and other agencies and groups.