I 
110TH CONGRESS 
1ST SESSION H. R. 2295 
To amend the Public Health Service Act to provide for the establishment 
of an Amyotrophic Lateral Sclerosis Registry. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 14, 2007 
Mr. ENGEL (for himself, Mr. TERRY, Mr. WAXMAN, Mr. UPTON, Mr. MAR-
KEY, Mr. WHITFIELD, Mr. TOWNS, Mr. SHIMKUS, Mr. RUSH, Mr. 
FOSSELLA, Mr. WYNN, Mrs. BONO, Mr. GENE GREEN of Texas, Mr. 
FERGUSON, Mrs. CAPPS, Mrs. MYRICK, Mr. DOYLE, Mr. ALLEN, Ms. 
SCHAKOWSKY, Ms. SOLIS, Mr. GONZALEZ, Mr. INSLEE, Ms. BALDWIN, 
Mr. ROSS, Mr. WEINER, Mr. MATHESON, Mr. BUTTERFIELD, Mr. BAR-
ROW, Ms. ROS-LEHTINEN, Mr. RANGEL, Mr. MCCRERY, Mr. STARK, Mr. 
GOODE, Mr. KENNEDY, Mr. GERLACH, Mr. ROTHMAN, Mr. BURTON of 
Indiana, Mr. EMANUEL, Mr. SHAYS, Mr. HIGGINS, Ms. FALLIN, Mr. 
COHEN, Mr. BOUSTANY, Mr. PATRICK J. MURPHY of Pennsylvania, Mr. 
SMITH of New Jersey, Mr. MCDERMOTT, Mr. BROWN of South Carolina, 
Ms. NORTON, Mrs. MCMORRIS RODGERS, Mr. PRICE of North Carolina, 
Mr. MCHUGH, Mr. ABERCROMBIE, Mr. EHLERS, Mr. MCNULTY, Mr. 
GALLEGLY, Mr. MCINTYRE, Mr. PEARCE, Mr. NADLER, Ms. CARSON, 
Mr. OLVER, Mr. TIERNEY, Mr. KANJORSKI, Mr. BISHOP of New York, 
Mr. MCGOVERN, Mr. CROWLEY, Mr. GRIJALVA, Mrs. LOWEY, Mr. SHER-
MAN, Ms. LORETTA
SANCHEZ
of California, Mr. MURTHA, Mr. 
ETHERIDGE, Mr. CAPUANO, Ms. KAPTUR, Mr. VAN HOLLEN, Mrs. 
MCCARTHY of New York, Ms. MCCOLLUM of Minnesota, Mr. BERMAN, 
Mr. SIRES, Ms. ROYBAL-ALLARD, Mr. CRAMER, Ms. HIRONO, Ms. 
BORDALLO, Mr. BOSWELL, and Mr. KIND) introduced the following bill; 
which was referred to the Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to provide for 
the establishment of an Amyotrophic Lateral Sclerosis 
Registry. 
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Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘ALS Registry Act’’. 
SEC. 2. FINDINGS. 
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 treat-
ment 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. 
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(8) Scientists believe that there are significant 
ties between ALS and other motor neuron diseases. 
(9) Several ALS disease registries and data-
bases exist in the United States and throughout the 
world, including the SOD1 database, the National 
Institute of Neurological Disorders and Stroke re-
pository, 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 Dis-
ease Control and Prevention to begin a nationwide 
ALS registry. 
(12) The Centers for Disease Control and Pre-
vention 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 preva-
lence of ALS in the United States; 
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(B) to collect data important to the study 
of ALS; 
(C) to promote a better understanding of 
ALS; 
(D) to collect information that is impor-
tant for research into the genetic and environ-
mental factors that cause ALS; 
(E) to strengthen the ability of a clearing-
house— 
(i) to collect and disseminate research 
findings on environmental, genetic and 
other causes of ALS and other motor neu-
ron disorders that can be confused with 
ALS, misdiagnosed as ALS, and in some 
cases progress to ALS; 
(ii) make available information to pa-
tients about research studies for which 
they may be eligible; and 
(iii) maintain information about clin-
ical specialists and clinical trials on thera-
pies; and 
(F) to enhance efforts to find treatments 
and a cure for ALS. 
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SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE 
ACT. 
Part P of title III of the Public Health Service Act 
(42 U.S.C. 280g et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 399O. AMYOTROPHIC LATERAL SCLEROSIS REG-
ISTRY. 
‘‘(a) ESTABLISHMENT.— 
‘‘(1) IN GENERAL.—Not later than 1 year after 
the receipt of the report described in subsection 
(b)(2)(A), the Secretary, acting through the Director 
of the Centers for Disease Control and Prevention 
and in consultation with a national voluntary health 
organization with experience serving the population 
of individuals with amyotrophic lateral sclerosis (re-
ferred to in this section as ‘ALS’), shall— 
‘‘(A) develop a system to collect data on 
ALS and other motor neuron disorders that can 
be confused with ALS, misdiagnosed as ALS, 
and in some cases progress to ALS, including 
information with respect to the incidence and 
prevalence of the disease in the United States; 
and 
‘‘(B) establish a national registry for the 
collection and storage of such data to include a 
population-based registry of cases in the United 
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