21 ACT PACKAGE

21 Act Package

The 21 Act package was introduced on July 29th, 2011 in the US House of Representatives by Representatives and Congressional Down Syndrome Caucus Co-Chairs, Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), and Chris Van Hollen (D-MD).  The 21 Act package includes two important pieces of legislation, the Trisomy 21 Research Resource Act of 2011 (HR 2696) and Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695).

The first bill, the Trisomy 21 Research Resource Act of 2011 (HR 2696), will expand and intensify Down syndrome programs of the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to create an infrastructure of Down syndrome tools, including a Down syndrome contract registry, Down syndrome research database, and Down syndrome biobank.  These research resources will further strengthen the research being conducted on Down syndrome across the country and better equip our research community with the tools necessary to facilitate their research.  This bill also establishes a Down Syndrome Consortium with NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

The second bill, the Trisomy 21 Research Centers of Excellence Act of 2011 (HR 2695), will create at least six Down Syndrome Translational Research Centers of Excellence that provide an optimal venue and infrastructure translational research on Down syndrome. The bill requires NIH to publish a research plan on Down syndrome, and update the plan every five years. This bill provides $6 million to support the Centers of Excellence.

The creation of the six Down Syndrome Centers of Excellences would focus on integrating basic and translational research and move findings efficiently toward clinical applications in Down syndrome.  Research conducted on Down syndrome may also have spinoffs that increase knowledge about other areas of research, diseases, and conditions.  Through outreach and communication efforts, the Centers will inform researchers and the public of scientific advances and improvements in medical care.

For more information, please contact Sara Weir, Policy Advisor, NDSS at sweir@ndss.org.

History

The Children's Health Act of 2000 (Public Law 106–310) amended the Public Health Service Act and included a number of provisions that addressed the research and surveillance needs of many disabilities (e.g., autism, traumatic brain injury, Fragile X, juvenile diabetes, asthma, epilepsy).  However, this landmark legislation did not address the significant research, surveillance, and clinical care needs of Down syndrome and thus has been an impediment to progress in the Down syndrome research community over the last decade.  The 21 Act Package attempts to incorporate Down syndrome as an area of permissible research and surveillance at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) and will foster a better understanding of Down syndrome.

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