The National Advocate for People with Down Syndrome Since 1979

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Trisomy 21 Research Act Package

Overview

During the 112th Congress, Senators Sherrod Brown (D-OH and Susan Collins (R-ME), and Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX) and Chris Van Hollen (D-MD) introduced a package of legislation aimed at strengthening the research infrastructure for Down syndrome and improving the translational research opportunities for Down syndrome. This legislation is known as the Trisomy 21 Research Package, which includes the Trisomy 21 Research Resource Act of 2011 and the Trisomy 21 Research Centers of Excellence Act of 2011.

Trisomy 21 Research Resource Act of 2011 (S. 1841/H.R. 2696)

The Trisomy 21 Research Resource Act  would 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. The bill does not require any additional cost (i.e., appropriations) to the federal government. 

These research tools 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 within NIH to facilitate the exchange of information and make research efforts more efficient by integrating the perspectives of key stake holders.

Senate Trisomy 21 Research Resource Act cosponsors
House Triosmy 21 Research Resource Act cosponsors

Trisomy 21 Research Centers of Excellence Act of 2011 (S. 1840/H.R. 2695)

The Trisomy 21 Research Centers of Excellence Act of 2011 would require the Director of the NIH to expand and intensify NIH programs with respect to research and related activities concerning Down syndrome. Additionally, the bill requires the Director of NIH to publish a research plan on Down syndrome and update it every five years.

Moreover, the legislation would require NIH to award grants and contracts to public or nonprofit private entities to pay all or part of the cost of planning, establishing, improving, and providing basic operating support for centers of excellence regarding translational research on Down syndrome.

Senate Trisomy 21 Centers of Excellence Act cosponsors
House Triosmy 21 Centers of Excellence Act cosponsors

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