http://www.washingtonwatch.com/bills info@washingtonwatch.com http://www.pjdoland.com/chai/?v=0.1 http://www.washingtonwatch.com/bills/history/110_PL_110-373.html?rev=8746 <p>S. 1382 would amend the Public Health Service Act to provide the establishment of an Amyotrophic Lateral Sclerosis Registry.</p> <h2 id="toc0"> Detailed Summary </h2> <p>(Log in to edit the wiki and be the first to provide a detailed summary of the bill!)</p> <!--Leave in the 'summary' tags if you want the latest summary from the Congressional Research Service automatically to replace the text between the tags once it becomes available. --> <h2 id="toc1"> Status of the Legislation </h2> <p>Latest Major Action: 5/14/2007: Referred to Senate committee. Status: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.</p> <!-- Leave in the 'status' tags if you want the latest reported status from THOMAS automatically to replace the text between the tags once it becomes available. --> <h2 id="toc2"> Points in Favor </h2> <p>(Log in to edit the wiki and be the first to show why the bill should pass!)<br /> <!-- First editor: Go ahead and take out the sentence in parentheses, and this notice! --> </p> <h2 id="toc3"> Points Against </h2> <p>(Log in to edit the wiki and be the first to show why the bill should not pass!)<br /> <!-- First editor: Go ahead and take out the sentence in parentheses, and this notice! --> </p> 8746@http://www.washingtonwatch.com Wed, 08 Aug 2007 17:44:41 EDT http://www.washingtonwatch.com/bills/history/110_PL_110-373.html?rev=8747 <p>S. 1382 would amend the Public Health Service Act to provide the establishment of an Amyotrophic Lateral Sclerosis Registry.</p> <h2 id="toc4"> Detailed Summary </h2> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <!--Leave in the 'summary' tags if you want the latest summary from the Congressional Research Service automatically to replace the text between the tags once it becomes available. --> <h2 id="toc5"> Status of the Legislation </h2> <p>Latest Major Action: 5/14/2007: Referred to Senate committee. Status: Read twice and referred to the Committee on Health, Education, Labor, and Pensions.</p> <!-- Leave in the 'status' tags if you want the latest reported status from THOMAS automatically to replace the text between the tags once it becomes available. --> <h2 id="toc6"> Points in Favor </h2> <p>(Log in to edit the wiki and be the first to show why the bill should pass!)<br /> <!-- First editor: Go ahead and take out the sentence in parentheses, and this notice! --> </p> <h2 id="toc7"> Points Against </h2> <p>(Log in to edit the wiki and be the first to show why the bill should not pass!)<br /> <!-- First editor: Go ahead and take out the sentence in parentheses, and this notice! --> </p> 8747@http://www.washingtonwatch.com Wed, 08 Aug 2007 17:44:41 EDT