ALS Registry Act
Latest action (8 Oct 2008): Became Public Law No: 110-373.
What this bill does
The ALS Registry Act authorizes the Secretary of Health and Human Services to establish a national registry for amyotrophic lateral sclerosis (ALS) and similar motor neuron disorders. This registry would collect and store data to better understand the incidence and prevalence of these diseases, and potentially identify associated environmental or occupational factors, demographic patterns, and connections between related disorders.
The act also allows for the creation of an advisory committee to guide the development and maintenance of the registry, including what information to collect and how it should be used. The Secretary can award grants to public or private organizations for data collection and analysis. This registry aims to support research and provide data access to entities like the National Institutes of Health and the Department of Veterans Affairs, while protecting personal privacy.
This bill, S. 1382, was introduced in 2007 and was enacted into law when it was signed by the President on October 8, 2008. The Secretary is also required to report to Congress on ALS registries within 18 months of the act's enactment.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Official summary
ALS Registry Act - (Sec. 2) Amends the Public Health Service Act to authorize the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), if scientifically advisable, to: (1) develop a system to collect data on amyotrophic lateral sclerosis (ALS) and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, or progress to ALS; and (2) establish a national registry for the collection and storage of such data to develop a population-based registry of cases.
Authorizes the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry, which may review information 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 and other motor neuron disorders.
Authorizes 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 research access to ALS data as recommended by the Advisory Committee in a manner that protects personal privacy.
Allows 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 (VA).
(Sec. 3) Authorizes the Secretary to report to the appropriate congressional committees on ALS registries, including: (1) the registries currently under way and future planned registries; (2) the criteria involved in determining what registries to conduct, defer, or suspend; (3) the scope of those registries; and (4) the activities the Secretary undertakes to establish partnerships with research and patient advocacy communities to expand registries.
Timeline
8 Oct 2008
Became Public Law No: 110-373.
Common questions
- What does S. 1382 do?
- The ALS Registry Act authorizes the Secretary of Health and Human Services to establish a national registry for amyotrophic lateral sclerosis (ALS) and similar motor neuron disorders. This registry would collect and store data to better understand the incidence and prevalence of these diseases, and potentially identify associated environmental or occupational factors, demographic patterns, and connections between related disorders. The act also allows for the creation of an advisory committee to guide the development and maintenance of the registry, including what information to collect and how it should be used. The Secretary can award grants to public or private organizations for data collection and analysis. This registry aims to support research and provide data access to entities like the National Institutes of Health and the Department of Veterans Affairs, while protecting personal privacy. This bill, S. 1382, was introduced in 2007 and was enacted into law when it was signed by the President on October 8, 2008. The Secretary is also required to report to Congress on ALS registries within 18 months of the act's enactment.
- Has S. 1382 become law?
- Yes. S. 1382 has been enacted. Status last updated 8 Oct 2008.
- Who sponsored S. 1382?
- S. 1382 was sponsored by Sen. Reid, Harry [D-NV] (D-NV), with 77 cosponsors.
- What's the latest action on S. 1382?
- Became Public Law No: 110-373. (8 Oct 2008).
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