Trisomy 21 Research Resource Act of 2011

Summary

Trisomy 21 Research Resource Act of 2011 - Amends the Public Health Service Act to require the Director of the National Institutes of Health (NIH), acting through the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, to expand and intensify NIH programs with respect to research and related activities concerning Down syndrome. Requires the Director of NIH to publish a research plan on Down syndrome and update it every five years or as appropriate. Authorizes the Director of NIH to: (1) conduct basic, clinical, and translational research on Down syndrome; (2) award a grant or contract for a registry of individuals with Down syndrome; (3) establish a database including the names, contact information, and each medical condition of individuals with Down syndrome; and (4) expand one or more tissue banks maintained or supported by NIH to identify any tissue harvested from a tissue donor with Down syndrome. Requires consent before including an individual's information in the registry, the database, or the tissue bank. Authorizes the Director of NIH to provide for the participation of NIH agencies in a consortium to facilitate the exchange of information and to make the research effort on Down syndrome more efficient and effective by ensuring consistent communication, minimizing duplication of effort, and integrating the varied perspectives of partner agencies, organizations, and individuals. Authorizes the Secretary, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) award grants and cooperative agreements for the collection, analysis, and reporting of data on Down syndrome; and (2) carry out epidemiological activities regarding Down syndrome.

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3 official files

• Introduced in Senate (text)

  Introduced in Senate · EN · 10 November 2011

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• Introduced in Senate (PDF)

  Introduced in Senate · EN · 10 November 2011

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• Introduced in Senate

  summary · EN · 10 November 2011

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