ALS Registry Act

Summary

ALS Registry Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) develop a system to collect data on amyotrophic lateral sclerosis (ALS); and (2) establish a national registry for the collection and storage of ALS data. Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to study and make recommendations to the Secretary concerning: (1) the development and maintenance of the registry; (2) the type of information to be included; (3) the manner in which data is to be collected; (4) the use and availability of such data; and (5) the collection of information about diseases and disorders that primarily affect motor neurons that are considered essential to furthering the study and cure of ALS. Allows the Secretary, acting through the Director, to award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on ALS. Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate among existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for public access to an electronic national database that accepts data from state registries, health care professionals, and others as recommended by the Advisory Committee in a manner that protects personal privacy. Requires the Secretary to ensure that epidemiological and other types of information is made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs.

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3 official files

• Introduced in Senate (text)

  Introduced in Senate · EN · 30 June 2005

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• Introduced in Senate (PDF)

  Introduced in Senate · EN · 30 June 2005

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• Introduced in Senate

  summary · EN · 30 June 2005

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