The NIH Is Listening…So Let Your Voice Be Heard

Since our founding in 2004, we at DSRTF have made it our mission to keep cognition research moving forward. As an active participant in initiatives like the National Institutes of Health’s Down syndrome consortium, we work hard to make sure research remains a priority in the national scientific agenda. Now you can join us in this effort by making your thoughts known.

Issued in 2007, the NIH’s Research Plan on Down Syndrome is currently under review to set research priorities for the next five years. The NIH has issued a request for information (RFI) soliciting comments about where the current plan succeeds, where it falls short, and what its future focus should be.

Points you may wish to consider for your response, courtesy of our Chief Scientific Officer, Dr. Michael Harpold:

  • The published 2007 plan [PDF] was reasonably comprehensive regarding issues and areas of importance for Down syndrome, and the progress is appreciated. However, given both the apparent breadth and depth of the plan, NIH funding as it stands would appear to be inadequate to achieve the plan’s objectives.
  • Sustained and increased support from the NIH has led to significant research progress towards understanding disorders like fragile X syndrome, cystic fibrosis, MS, and Huntington’s disease — many of which affect an equal or significantly smaller part of the population than DS. Proportionally, however, NIH funding for cystic fibrosis research is more than 50 times greater than for DS research, Huntington’s more than 35 times greater, fragile X more than 30 times greater, and so on.Image
    Given that Down syndrome affects more than 400,000 children and adults in the US, DS research is dramatically underfunded. Meaningfully proportionate increases in NIH funding for Down syndrome research are justified and essential.
  • In concert with NIH-supported research, focused non-governmental research efforts and funding have led to unprecedented progress in cognition research, including the initiation of clinical trials. There should be a proportional increase in NIH funding and number of grants to accelerate and encourage further advances and progress in both basic and translational research.
  • The cognitive disability significantly and globally affects all individuals with Down syndrome across their entire life span, justifying increased research and associated funding to explore the interrelationship of cognitive disability with other medical issues that can occur in concert with DS, such as sleep irregularities; obesity and metabolic problems; seizures, endocrine, and immune disorders.
  • There has been recent progress toward developing a Down Syndrome Patient Registry and a commitment by NIH to contribute funding to initiate and establish it. Such a registry could have significant value to DS researchers and clinicians, but only if it is funded sufficiently, to the extent that it can be successfully established and operated on a multi-year basis, and with further support for research projects that will use and contribute in turn to the registry.
  • Research progress has continued to demonstrate an invariable connection between Down syndrome and Alzheimer’s disease. The updated and revised plan should emphasize this more strongly, with appropriate objectives and funding to reflect the significant potential for the development of effective new therapies.
  • The major revision of the NIH Down syndrome website already underway could provide an important tool to deliver more up-to-date information on Down syndrome research to the Down syndrome community as well as researchers and clinicians. A useful, comprehensive site would serve as a central clearinghouse for updates on NIH grant objectives and results; announcements of funding opportunities and initiatives; participation opportunities in clinical studies and trials; best and up-to-the-minute clinical practices; and reliable information on Down syndrome for parents and caregivers.

What areas of research are important to you and your family? What should the Plan’s objectives be? This is a rare opportunity for you to help shape the course of research directly. Your input is vital to ensure that the resulting plan reflects the concerns of the community it serves. Let the NIH know what matters to you by responding to the RFI by October 16.

2 thoughts on “The NIH Is Listening…So Let Your Voice Be Heard

  1. Tara

    For me..speech and language why some children struggle and other can talk ..enhancing speech and enhancing cognitive abilities to best ability.

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