HR 2295 PCS
‘‘(2) PURPOSE.—It is the purpose of the reg-
istry established under paragraph (1)(B) to gather 
available data concerning— 
‘‘(A) ALS, including the incidence and 
prevalence of ALS in the United States; 
‘‘(B) the environmental and occupational 
factors that may be associated with the disease; 
‘‘(C) the age, race or ethnicity, gender, and 
family history of individuals who are diagnosed 
with the disease; 
‘‘(D) other motor neuron disorders that 
can be confused with ALS, misdiagnosed as 
ALS, and in some cases progress to ALS; and 
‘‘(E) other matters as recommended by the 
Advisory Committee established under sub-
section (b). 
‘‘(b) ADVISORY COMMITTEE.— 
‘‘(1) ESTABLISHMENT.—Not later than 90 days 
after the date of the enactment of this section, the 
Secretary, acting through the Director of the Cen-
ters for Disease Control and Prevention, shall estab-
lish a committee to be known as the Advisory Com-
mittee on the National ALS Registry (referred to in 
this section as the ‘Advisory Committee’). The Advi-
sory Committee shall be composed of at least one 
VerDate Aug 31 2005 
21:30 Oct 31, 2007
Jkt 069200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6201
E:\BILLS\H2295.PCS
H2295
pwalker on PROD1PC71 with BILLS
HR 2295 PCS
member, to be appointed by the Secretary, acting 
through the Director of the Centers for Disease 
Control and Prevention, representing each of the fol-
lowing: 
‘‘(A) National voluntary health associa-
tions that focus solely on ALS and have dem-
onstrated experience in ALS research, care, and 
patient services, as well as other voluntary asso-
ciations focusing on neurodegenerative diseases 
that represent and advocate on behalf of pa-
tients with ALS and patients with other motor 
neuron disorders that can be confused with 
ALS, misdiagnosed as ALS, and in some cases 
progress to ALS. 
‘‘(B) The National Institutes of Health, to 
include, upon the recommendation of the Direc-
tor of the National Institutes of Health, rep-
resentatives from the National Institute of Neu-
rological Disorders and Stroke and the National 
Institute of Environmental Health Sciences. 
‘‘(C) The Department of Veterans Affairs. 
‘‘(D) The Agency for Toxic Substances 
and Disease Registry. 
‘‘(E) The Centers for Disease Control and 
Prevention. 
VerDate Aug 31 2005 
21:30 Oct 31, 2007
Jkt 069200
PO 00000
Frm 00007
Fmt 6652
Sfmt 6201
E:\BILLS\H2295.PCS
H2295
pwalker on PROD1PC71 with BILLS
HR 2295 PCS
‘‘(F) Patients with ALS or their family 
members. 
‘‘(G) Clinicians with expertise on ALS and 
related diseases. 
‘‘(H) Epidemiologists with experience in 
data registries. 
‘‘(I) Geneticists or experts in genetics who 
have experience with the genetics of ALS or 
other neurological diseases. 
‘‘(J) Statisticians. 
‘‘(K) Ethicists. 
‘‘(L) Attorneys. 
‘‘(M) Other individuals with an interest in 
developing and maintaining the National ALS 
Registry. 
‘‘(2) DUTIES.—The Advisory Committee shall 
review information and make recommendations to 
the Secretary concerning— 
‘‘(A) the development and maintenance of 
the National ALS Registry; 
‘‘(B) the type of information to be col-
lected and stored in the Registry; 
‘‘(C) the manner in which such data is to 
be collected; 
VerDate Aug 31 2005 
21:30 Oct 31, 2007
Jkt 069200
PO 00000
Frm 00008
Fmt 6652
Sfmt 6201
E:\BILLS\H2295.PCS
H2295
pwalker on PROD1PC71 with BILLS
HR 2295 PCS
‘‘(D) the use and availability of such data 
including guidelines for such use; and 
‘‘(E) 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. 
‘‘(3) REPORT.—Not later than 1 year after the 
date on which the Advisory Committee is estab-
lished, the Advisory Committee shall submit a report 
concerning the review conducted under paragraph 
(2) that contains the recommendations of the Advi-
sory Committee with respect to the results of such 
review. 
‘‘(c) GRANTS.—Notwithstanding the recommenda-
tions of the Advisory Committee under subsection (b), the 
Secretary, acting through the Director of the Centers for 
Disease Control and Prevention, may award grants to, and 
enter into contracts and cooperative agreements with, pub-
lic or private nonprofit entities for the collection, analysis, 
and reporting of data on ALS and other motor neuron 
disorders that can be confused with ALS, misdiagnosed 
as ALS, and in some cases progress to ALS. 
‘‘(d) COORDINATION WITH STATE, LOCAL, AND FED-
ERAL REGISTRIES.— 
VerDate Aug 31 2005 
21:30 Oct 31, 2007
Jkt 069200
PO 00000
Frm 00009
Fmt 6652
Sfmt 6201
E:\BILLS\H2295.PCS
H2295
pwalker on PROD1PC71 with BILLS
HR 2295 PCS
‘‘(1) IN
GENERAL.—In establishing the Na-
tional ALS Registry under subsection (a), the Sec-
retary, acting through the Director of the Centers 
for Disease Control and Prevention, shall— 
‘‘(A) identify, build upon, expand, and co-
ordinate among existing data and surveillance 
systems, surveys, registries, and other Federal 
public health and environmental infrastructure 
wherever possible, including— 
‘‘(i) the 3 ALS registry pilot projects 
initiated in fiscal year 2006 by the Centers 
for Disease Control and Prevention and 
the Agency for Toxic Substances and Dis-
ease Registry at the South Carolina Office 
of Research & Statistics; the Mayo Clinic 
in Rochester, Minnesota; and Emory Uni-
versity in Atlanta, Georgia; 
‘‘(ii) the Department of Veterans Af-
fairs ALS Registry; 
‘‘(iii) the DNA and Cell Line Reposi-
tory of the National Institute of Neuro-
logical Disorders and Stroke Human Ge-
netics Resource Center; 
‘‘(iv) the Agency for Toxic Substances 
and Disease Registry studies, including 
VerDate Aug 31 2005 
21:30 Oct 31, 2007
Jkt 069200
PO 00000
Frm 00010
Fmt 6652
Sfmt 6201
E:\BILLS\H2295.PCS
H2295
pwalker on PROD1PC71 with BILLS