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Managing America: Health

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Week Ending October 19, 2007

H.R.2295 To amend the Public Health Service Act to provide for the establishment of an Amyotrophic Lateral Sclerosis Registry.

The Secretary of Health and Human Services is required to develop a system for the collection of data on amyotrophic lateral scleroses (ALS) and establish a registry for the storage of the data. ALS is known more commonly as Lou Gehrig's disease, named after the US baseball star who succumbed to it. Data on other motor neuron disorders that are easily confused with ALS, misdiagnoses as ALS or progress to ALS is also to  be collected. The registry will be established and maintained at the Centers for Disease Control and Prevention (CDC).

ALS is a degenerative neurological disease that slowly degrades the patient’s motor nerve cells and brain resulting in the loss of the ability to move and talk. It is diagnosed 5,000 time years and brings with it a 2 to 5 year life expectancy after diagnosis. The only treatment extends life for a couple of months and the causes are relatively unknown although environmental and genetic factors are suspected.

The CDC Director will establish the Advisory Committee on the National ALS Registry to review information and recommend directions on the development and maintenance of the registry, the type of information to include in it, the manner of data collection, the use of the data and the collection of data on the related neurological diseases.

The Act provides for grants and contracts to public and private nonprofit entities for collecting, analyzing and reporting of the data. The Secretary is required, however, to identify and build upon and expand existing data and surveillance systems, surveys, registries and other public health infrastructure wherever possible. The existing efforts to be built upon include the CDC, South Carolina Office of Research & Statistics, Mayo Clinic in Rochester, MN, Emory University in Atlanta, GA, the Department of Veterans Affairs, the DNA and Cell Line Repository of the National Institute of Neurological Disorders and Stroke Human Genetics, Resource Center, the Agency for Toxic Substances and Disease Registry, State-based ALS registries, the National Vital Statistics System

Sponsor:  Rep. Elliot Engel (D-NY-17^th)

Vote: Passed House 411 to 3 RC 970 October 15, 2007

Cost to the taxpayers: $25 million is authorized for fy 2008, such sums as may be necessary through 2012.

Earmark Certification:  

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MORE INFORMATION

Congress makes the following findings:

(1) Amyotrophic lateral sclerosis (referred to in this section as `ALS') is a fatal, progressive neurodegenerative disease that affects motor nerve cells in the brain and the spinal cord.

(2) The average life expectancy for a person with ALS is 2 to 5 years from the time of diagnosis.

(3) The cause of ALS is not well understood.

(4) There is only one drug currently approved by the Food and Drug Administration for the treatment of ALS, which has thus far shown only modest effects, prolonging life by just a few months.

(5) There is no known cure for ALS.

(6) More than 5,000 individuals in the United States are diagnosed with ALS annually and as many as 30,000 individuals may be living with ALS in the United States today.

(7) Studies have found relationships between ALS and environmental and genetic factors, but those relationships are not well understood.

(8) Scientists believe that there are significant ties between ALS and other motor neuron diseases.

(9) Several ALS disease registries and databases exist in the United States and throughout the world, including the SOD1 database, the National Institute of Neurological Disorders and Stroke repository, and the Department of Veterans Affairs ALS Registry.

(10) A single national system to collect and store information on the prevalence and incidence of ALS in the United States does not exist.

(11) In each of fiscal years 2006 and 2007, Congress directed $887,000 to the Centers for Disease Control and Prevention to begin a nationwide ALS registry.

(12) The Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry has established three pilot projects, beginning in fiscal year 2006, to evaluate the science to guide the creation of a national ALS registry.

(13) The establishment of a national registry will help--

(A) to identify the incidence and prevalence of ALS in the United States;

(B) to collect data important to the study of ALS;

(C) to promote a better understanding of ALS;

(D) to collect information that is important for research into the genetic and environmental factors that cause ALS;

(E) to strengthen the ability of a clearinghouse--

(i) to collect and disseminate research findings on environmental, genetic and other causes of ALS and other motor neuron disorders that can be confused with ALS, misdiagnosed as ALS, and in some cases progress to ALS;

(ii) make available information to patients about research studies for which they may be eligible; and

(iii) maintain information about clinical specialists and clinical trials on therapies; and

(F) to enhance efforts to find treatments and a cure for ALS.

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