ALS Registry Act
Latest action (7 Oct 2005): Introduced
What this bill does
H.R. 4033, the ALS Registry Act, would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the CDC, to create a national data collection system and registry tracking Amyotrophic Lateral Sclerosis (ALS) cases in the United States. The bill requires establishment of an Advisory Committee—drawing on ALS organizations, federal agencies (NIH, VA, CDC, the Agency for Toxic Substances and Disease Registry), patients, clinicians, scientists, and other experts—to recommend how the registry should be built, what data it should collect, and how that data should be used. The CDC would also coordinate with existing federal, state, and VA ALS-related registries and databases, and could award grants or contracts to nonprofit entities to help collect and analyze data. The bill authorizes $25 million for fiscal year 2006 and unspecified sums for 2007–2010.
The bill would primarily affect ALS patients and their families, researchers, healthcare providers, and federal health agencies, by creating a centralized source of information on ALS incidence, prevalence, and potential environmental or genetic factors, and a mechanism to connect patients with researchers and clinical trials.
The bill was introduced on October 7, 2005, by Rep. Eliot Engel with numerous cosponsors, and was referred to the House Committee on Energy and Commerce. It did not receive a vote during the 109th Congress and did not become 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 (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.
Common questions
- What does H.R. 4033 do?
- H.R. 4033, the ALS Registry Act, would amend the Public Health Service Act to direct the Secretary of Health and Human Services, acting through the CDC, to create a national data collection system and registry tracking Amyotrophic Lateral Sclerosis (ALS) cases in the United States. The bill requires establishment of an Advisory Committee—drawing on ALS organizations, federal agencies (NIH, VA, CDC, the Agency for Toxic Substances and Disease Registry), patients, clinicians, scientists, and other experts—to recommend how the registry should be built, what data it should collect, and how that data should be used. The CDC would also coordinate with existing federal, state, and VA ALS-related registries and databases, and could award grants or contracts to nonprofit entities to help collect and analyze data. The bill authorizes $25 million for fiscal year 2006 and unspecified sums for 2007–2010. The bill would primarily affect ALS patients and their families, researchers, healthcare providers, and federal health agencies, by creating a centralized source of information on ALS incidence, prevalence, and potential environmental or genetic factors, and a mechanism to connect patients with researchers and clinical trials. The bill was introduced on October 7, 2005, by Rep. Eliot Engel with numerous cosponsors, and was referred to the House Committee on Energy and Commerce. It did not receive a vote during the 109th Congress and did not become law.
- Has H.R. 4033 become law?
- Not yet. As of 7 Oct 2005, H.R. 4033 is introduced.
- Who sponsored H.R. 4033?
- H.R. 4033 was sponsored by Rep. Eliot Engel [D-NY16, 2013-2020] (Democrat-NY), with 215 cosponsors.
- What's the latest action on H.R. 4033?
- Introduced (7 Oct 2005).
Related bills in Health
Expressing support for the designation of September 22, 2026, as “National Hispanic Nurses Day” and recognizing the National Association of Hispanic Nurses as the leading organization representing and advocating for Hispanic nurses.
Recognizing the importance of protecting continuous Medicaid coverage for individuals undergoing active cancer treatment.
Community Health Worker Access Act
A resolution supporting the designation of October 2026 as “Substance Use & Misuse Prevention Month” to raise awareness of substance use and misuse in the United States.
Bill100 mirrors the public U.S. legislative record from Congress.gov and GovTrack and adds plain-English AI summaries. It is an information tool, not legal, compliance or lobbying advice, and it is not affiliated with the U.S. Congress or any government agency. AI summaries can simplify or omit detail — every bill links to the official source; verify there before you rely on it.