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  • Not enacted
    The President has not signed this bill
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      house Committees
      House Committee on Energy and Commerce
      Health
    IntroducedSeptember 25th, 2009

Bill Details

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Title

21 Act

Official Title

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.

Summary

Trisomy 21 Translational Research Parity Act of 2009 or the 21 Act - Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH): (1) in coordination with the directors of specified national research institutes, to expand and intensify NIH programs with respect to translational research and related activities concerning Down syndrome; and (2) allocate specified funds among such institutes. Requires the Director to award grants and contracts for, and provide for the establishment of, at least six centers of excellence regarding such translational research to: (1) contribute to a comprehensive research portfolio for Down syndrome, provide an optimal venue and infrastructure for patient-oriented research, and conduct basic, clinical, and translational research on Down syndrome; (2) carry out a program to make individuals aware of opportunities to participate as subjects in research conducted by the centers; and (3) establish or expand training programs for medical and allied health clinicians and scientists in research relevant to Down syndrome. Requires the Director, in coordination of the National Down Syndrome Patient Registry and Biobank (Biobank), to provide for a program under which samples of tissues and genetic materials that are of use in research on Down syndrome are made available. Requires the Secretary of Health and Human Services (HHS) to: (1) establish the Down Syndrome Coordinating Committee to coordinate federal health programs relating to Down syndrome; (2) award grants and cooperative agreements for the collection, analysis, and reporting of data on, and for epidemiological activities regarding, Down syndrome; (3) establish the Biobank and an advisory committee; and (4) enter into cooperative agreements to develop, implement, and manage Down Syndrome Centers of Excellence.

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