ALS Registry Act
The source supplies the latest action, but no lifecycle stage.
Latest action (30 Jun 2005): Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR 7/1/2005 S7836-7837)
What this bill does
This bill, S. 1353, would require the Secretary of Health and Human Services, through the Centers for Disease Control and Prevention (CDC), to establish a national registry for Amyotrophic Lateral Sclerosis (ALS). The registry would collect and store data on ALS incidence, prevalence, and potentially related environmental and genetic factors. It would also aim to connect patients with researchers.
The bill would affect individuals diagnosed with ALS, their families, and medical professionals involved in their care. It also mandates the establishment of an advisory committee composed of various experts and patient representatives to make recommendations on the registry's development, data collection, and use. The CDC would be able to award grants to public or private organizations for data collection and analysis related to ALS.
As of the provided information, S. 1353 was introduced in the Senate in June 2005 and has not advanced beyond that stage. It was referred to the Committee on Health, Education, Labor, and Pensions.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Official 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.
Timeline
30 Jun 2005
Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR 7/1/2005 S7836-7837)
Common questions
- What does S. 1353 do?
- This bill, S. 1353, would require the Secretary of Health and Human Services, through the Centers for Disease Control and Prevention (CDC), to establish a national registry for Amyotrophic Lateral Sclerosis (ALS). The registry would collect and store data on ALS incidence, prevalence, and potentially related environmental and genetic factors. It would also aim to connect patients with researchers. The bill would affect individuals diagnosed with ALS, their families, and medical professionals involved in their care. It also mandates the establishment of an advisory committee composed of various experts and patient representatives to make recommendations on the registry's development, data collection, and use. The CDC would be able to award grants to public or private organizations for data collection and analysis related to ALS. As of the provided information, S. 1353 was introduced in the Senate in June 2005 and has not advanced beyond that stage. It was referred to the Committee on Health, Education, Labor, and Pensions.
- Has S. 1353 become law?
- The source does not supply a confirmed lifecycle stage for S. 1353. Check the latest action and official source below.
- Who sponsored S. 1353?
- S. 1353 was sponsored by Sen. Reid, Harry [D-NV] (D-NV), with 50 cosponsors.
- What's the latest action on S. 1353?
- Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (text of measure as introduced: CR 7/1/2005 S7836-7837) (30 Jun 2005).
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