H.R. 2295 would amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry.
Detailed 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.
Status of the Legislation
Latest Major Action: 10/31/2007: Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 457.
Points in Favor
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Points Against
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Visitor Comments
Leon Peek
June 11, 2007, 8:41am (report abuse)Lou Gehrig died 66 years ago. 66 * 365 * 15 = 361,350 American deaths. That's close to the entire population of Miami based on the estimates. It could turn out to be a lot bigger number than that if we were to start counting more accurately.