H.R. 2295: ALS Registry Act

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H.R. 2295: ALS Registry Act

110th Congress · introduced 2007-05-14 · Health · Latest: Read the second time. Placed on Senate Legislative Calendar under General Orders. Calendar No. 457.

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Official title

ALS Registry Act

Plain 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.

Congressional Research Service summary (Passed House amended), quoted unchanged (nonpartisan). Read the source.

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How did my representative vote? · This bill's floor votes

Officials and money

Sponsor: Rep. Engel, Eliot L. [D-NY-17] · 276 cosponsors

Cost estimate: CBO cost estimate: H.R. 2295, ALS Registry Act (2007-10-04); CBO cost estimate: H.R. 2295, ALS Registry Act (2007-10-04)

Cosponsors on this site

Edward J. Markey (D-MA), Janice D. Schakowsky (D-IL), Tammy Baldwin (D-WI), Steve Cohen (D-TN), Christopher H. Smith (R-NJ), Eleanor Holmes Norton (D-DC), Jerrold Nadler (D-NY) and 216 more.

Recorded votes

• House roll call 970 (2007): On Motion to Suspend the Rules and Pass, as Amended, HR2295 (2007-10-16): Passed

Sources

• Congressional Research Service summary (Passed House amended)
• Congress.gov
• Data: GovInfo BILLSTATUS bulk data (Library of Congress), BILLSTATUS-110hr2295.xml <https://www.govinfo.gov/bulkdata/BILLSTATUS/110/hr>

Record fed-us-cong110-hr2295 · catalog fed-us-congress-bills-cong110 · updated 2026-11-15 by psicol fed-bills-cong110