NIH Issues Finalized Research Plan on Down Syndrome

The US National Institutes of Health has issued the final version of the NIH Plan on Down Syndrome Research setting the NIH research goals for the next 10 years to extend previous NIH-sponsored intramural and extramural research on Down syndrome.  The NIH Plan was developed by a working group of NIH scientists in a process that included input and comments from researchers in universities and institutions across the country as well as Down syndrome research advocacy organizations, including the Down Syndrome Research & Treatment Foundation, which is now the LuMind Foundation, and families of individuals with Down syndrome.  The plan includes:

  • Guidelines to coordinate and prioritize Down syndrome research objectives and strategies for the NIH over the next 10 years focused on cognitive, medical and behavioral conditions occurring in individuals with Down syndrome;
  •  Summary reviews of research programs involving various NIH institutes;
  • Summary reviews of recent relevant scientific meetings; and,
  • A selected listing of publications that have resulted from fully or partially NIH-supported Down syndrome research.

“DSRTF is encouraged by the development of this new NIH Plan on Down Syndrome Research, and, specifically, the proposed increase in priority for cognitive research,” said Dr. Michael Harpold, DSRTF CEO.   “The plan represents an important step in assessing, focusing and prioritizing the NIH objectives in Down syndrome research for the next decade, and proposes a relatively high-level strategy for the NIH to achieve these objectives.”

“This final plan has been revised relative to the draft version released for comments last October.  It is heartening to note that public comments, including comments submitted by DSRTF associates and friends, appear to have contributed to the refinement and focus of the final plan,” Dr. Harpold added.  “However, the NIH plan does not specifically address the allocation of, or any needed increases in, NIH funding for Down syndrome research, and progress on implementation and execution of the plan will be critical key next steps.  DSRTF will continue to monitor the progress on the NIH plan as well as engage in continuing relevant dialog and cooperation to advance Down syndrome research.  DSRTF, through its unique mission and strategy, is committed to aggressively expand DSRTF’s increasingly needed role to directly and proactively identify and provide meaningful funding for results-driven innovative research to accelerate the development of effective new therapies to improve cognition in individuals with Down syndrome and create new opportunities for greater independence and achievement.”

For additional information:
NIH News, NIH develops Down syndrome research plan. http://www.nih.gov/news/health/jan2008/nichd-22.htm.
US Department of Health and Human Services, National Institutes of Health Research Plan on Down Syndrome.http://www.nichd.nih.gov/publications/pubs/upload/NIH_Downsyndrome_plan

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