ALS Registry Act
Latest action (16 Oct 2007): On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970).
What this bill does
H.R. 2295, the ALS Registry Act, would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Centers for Disease Control and Prevention, to create a national system for collecting data on amyotrophic lateral sclerosis (ALS) and related motor neuron disorders, and to establish a population-based national ALS registry. The bill also requires creation of an Advisory Committee, made up of representatives from patient groups, federal agencies, clinicians, researchers, and other experts, to recommend how the registry should be built, what data it should collect, and how that data should be used. The Secretary would be authorized to award grants and contracts to public or private nonprofit entities to help collect and analyze this data, and to coordinate with existing federal, state, and local ALS-related registries and databases. The law would also require sharing of registry information with the National Institutes of Health and the Department of Veterans Affairs, subject to privacy protections, and it would authorize funding of $25 million for fiscal year 2008 and $16 million annually for fiscal years 2009 through 2012.
The bill primarily affects ALS patients and their families, researchers studying ALS and related disorders, and federal health agencies such as the CDC, NIH, and VA, by centralizing data that could support research into causes, treatment, and prevalence of the disease.
The bill passed the House on October 16, 2007, by a vote of 411–3, and was next to be considered by the Senate. According to the official CRS summary, its provisions were ultimately incorporated into other legislation that was later enacted, rather than being enacted as a standalone law.
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 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.
Requires the Secretary, acting through the Director, to establish the Advisory Committee on the National ALS Registry to 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. Sets forth reporting requirements.
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.
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 research access to ALS data 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.
Authorizes appropriations for FY2008-FY2012.
Timeline
16 Oct 2007
On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970).
27 Sep 2007
Ordered to be Reported (Amended) by Voice Vote.
Common questions
- What does H.R. 2295 do?
- H.R. 2295, the ALS Registry Act, would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the Centers for Disease Control and Prevention, to create a national system for collecting data on amyotrophic lateral sclerosis (ALS) and related motor neuron disorders, and to establish a population-based national ALS registry. The bill also requires creation of an Advisory Committee, made up of representatives from patient groups, federal agencies, clinicians, researchers, and other experts, to recommend how the registry should be built, what data it should collect, and how that data should be used. The Secretary would be authorized to award grants and contracts to public or private nonprofit entities to help collect and analyze this data, and to coordinate with existing federal, state, and local ALS-related registries and databases. The law would also require sharing of registry information with the National Institutes of Health and the Department of Veterans Affairs, subject to privacy protections, and it would authorize funding of $25 million for fiscal year 2008 and $16 million annually for fiscal years 2009 through 2012. The bill primarily affects ALS patients and their families, researchers studying ALS and related disorders, and federal health agencies such as the CDC, NIH, and VA, by centralizing data that could support research into causes, treatment, and prevalence of the disease. The bill passed the House on October 16, 2007, by a vote of 411–3, and was next to be considered by the Senate. According to the official CRS summary, its provisions were ultimately incorporated into other legislation that was later enacted, rather than being enacted as a standalone law.
- Has H.R. 2295 become law?
- Not yet. As of 16 Oct 2007, H.R. 2295 is passed house (senate next).
- Who sponsored H.R. 2295?
- H.R. 2295 was sponsored by Rep. Eliot Engel [D-NY16, 2013-2020] (Democrat-NY), with 276 cosponsors.
- What's the latest action on H.R. 2295?
- On motion to suspend the rules and pass the bill, as amended Agreed to by the Yeas and Nays: (2/3 required): 411 - 3 (Roll no. 970). (16 Oct 2007).
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