National MS and Parkinson's Disease Registries Act
The source supplies the latest action, but no lifecycle stage.
Latest action (16 Jun 2009): Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
What this bill does
S. 1273, the National MS and Parkinson's Disease Registries Act, would amend the Public Health Service Act to create permanent national surveillance systems for multiple sclerosis (MS) and Parkinson's disease, run by the Secretary of Health and Human Services through the Agency for Toxic Substances and Disease Registry. Each system would include a population-based registry collecting data on disease incidence, prevalence, and patient characteristics such as age, race, gender, military service, and family history. The bill also establishes an Advisory Committee on Neurological Disease Registries, made up of representatives from patient groups, federal health agencies, researchers, and other experts, to guide development of the registries and to consider expanding similar systems to other neurological diseases. It directs coordination with existing state and federal databases and authorizes $5 million annually for fiscal years 2010–2014.
The bill would primarily affect patients with MS and Parkinson's disease, researchers studying these diseases, and federal agencies including the CDC, NIH, FDA, VA, and Department of Defense, which would be involved in data collection, coordination, and use. It aims to improve understanding of disease causes, prevalence, and treatment by consolidating currently scattered data sources into unified national systems.
The bill was introduced in the Senate on June 16, 2009, by Senator Byron Dorgan and referred to the Committee on Health, Education, Labor, and Pensions. It did not receive a vote and did not become law during the 111th Congress.
Plain-English summary generated by Bill100 AI from the official record. Always verify against the source below.
Official summary
National MS and Parkinson's Disease Registries Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) , acting through the Director of the Agency for Toxic Substances and Disease Registry, to: (1) develop a system to collect data on multiple sclerosis (MS) and a system to collect data on Parkinson's disease; (2) establish a national surveillance system for the collection and storage of data for each such disease, including population-based registries of U.S. cases of MS and Parkinson's disease; (3) provide analysis regarding expansion of national disease surveillance systems for other neurological diseases and disorders; and (4) establish the Advisory Committee on Neurological Disease Registries.
Allows the Secretary, acting through the Director, to provide for the collection, analysis, and reporting of data on MS and Parkinson's disease.
Requires the Secretary, acting through the Director, to: (1) identify, build upon, expand, and coordinate existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure wherever possible; and (2) provide for research access to Parkinson's disease and MS data.
Requires the Secretary to ensure that epidemiological and other types of information collected are made available to agencies such as the National Institutes of Health (NIH), the Food and Drug Administration (FDA), the Department of Veterans Affairs (VA), and the Department of Defense (DOD).
Timeline
16 Jun 2009
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Common questions
- What does S. 1273 do?
- S. 1273, the National MS and Parkinson's Disease Registries Act, would amend the Public Health Service Act to create permanent national surveillance systems for multiple sclerosis (MS) and Parkinson's disease, run by the Secretary of Health and Human Services through the Agency for Toxic Substances and Disease Registry. Each system would include a population-based registry collecting data on disease incidence, prevalence, and patient characteristics such as age, race, gender, military service, and family history. The bill also establishes an Advisory Committee on Neurological Disease Registries, made up of representatives from patient groups, federal health agencies, researchers, and other experts, to guide development of the registries and to consider expanding similar systems to other neurological diseases. It directs coordination with existing state and federal databases and authorizes $5 million annually for fiscal years 2010–2014. The bill would primarily affect patients with MS and Parkinson's disease, researchers studying these diseases, and federal agencies including the CDC, NIH, FDA, VA, and Department of Defense, which would be involved in data collection, coordination, and use. It aims to improve understanding of disease causes, prevalence, and treatment by consolidating currently scattered data sources into unified national systems. The bill was introduced in the Senate on June 16, 2009, by Senator Byron Dorgan and referred to the Committee on Health, Education, Labor, and Pensions. It did not receive a vote and did not become law during the 111th Congress.
- Has S. 1273 become law?
- The source does not supply a confirmed lifecycle stage for S. 1273. Check the latest action and official source below.
- Who sponsored S. 1273?
- S. 1273 was sponsored by Sen. Dorgan, Byron L. [D-ND] (D-ND), with 30 cosponsors.
- What's the latest action on S. 1273?
- Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (16 Jun 2009).
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