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Trisomy 21 Translational Research Parity Act of 2009

To amend the Public Health Service Act to expand and intensify programs of the National Institutes of Health and the Centers for Disease Control and Prevention with respect to translational research and related activities concerning Down syndrome, and for other purposes. This is also known as the "21 Act".

On September 29, 2009, Representative Cathy McMorris Rodgers (R-WA) introduced H.R. 3656, the Trisomy 21 Translational Research Parity Act of 2009. The bill would require the NIH to award grants and contracts to establish Centers of Excellence for the purpose of expanding and intensifying translational research regarding Down Syndrome. The bill would also require NIH to establish a Down Syndrome Coordinating Committee (Committee), to include both governmental and non-governmental members. The Committee would be responsible for developing a “plan for conducting and supporting research and education on Down Syndrome through the national research institutes.” The bill mentions the following ICs as responsible for carrying out NIH’s responsibilities: NICHD, NHLBI, NIAID, NINDS, NCI, NIA, and NIMH. A companion measure, S. 1762, was introduced by Senator Sam Brownback (R-KS) on October 9.

Based on advice from its Science and Clinical Advisory Boards, NDSS developed legislation which will enhance the capacities of Down syndrome clinical care centers; establish research centers of excellence on Down syndrome; create a Down syndrome biobank, patient registry and a cross-governmental Task Force. The bill was introduced by Senator Sam Brownback (R-KS) and Senator Sherrod Brown (D-OH) in November 2008.

Websites:

Full Text of the Bill

Down Syndrome Research and Treatment Foundation Parity Act page

DSA Advocacy Alert - August 8, 2011

 
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