II 

Calendar No. 518 

110TH CONGRESS 

1ST SESSION S. 1382 

To amend the Public Health Service Act to provide for the establishment 

of an Amyotrophic Lateral Sclerosis Registry. 

IN THE SENATE OF THE UNITED STATES 

MAY 14, 2007 

Mr. REID (for himself, Mrs. MURRAY, Mrs. BOXER, Mr. HARKIN, Mr. BROWN, 

Mr. ISAKSON, Mr. INOUYE, Mr. DURBIN, Mr. SANDERS, Mr. CRAIG, Mr. 

BAUCUS, Mr. REED, Mrs. FEINSTEIN, Mr. COLEMAN, Mr. COCHRAN, Mr. 

CONRAD, Mrs. CLINTON, Mr. MENENDEZ, Mr. THUNE, Mr. BUNNING, 

Ms. MURKOWSKI, Mrs. DOLE, Mr. JOHNSON, Ms. KLOBUCHAR, Mr. 

BURR, Mr. DODD, Mr. NELSON of Florida, Mr. BAYH, Mr. HAGEL, Mr. 

LAUTENBERG, Mr. VITTER, Mr. WARNER, Mr. SCHUMER, Mr. BINGAMAN, Mr. LOTT, Mr. DEMINT, Mr. BENNETT, Ms. SNOWE, Mr. DORGAN, 

Ms. STABENOW, Mr. MARTINEZ, Mr. CASEY, Mr. GRAHAM, Mr. TESTER, 

Mr. SMITH, Mr. LIEBERMAN, Mr. WHITEHOUSE, Mr. CARDIN, Mr. 

AKAKA, Mr. GRASSLEY, Ms. CANTWELL, Ms. COLLINS, Ms. LANDRIEU, 

Mr. WYDEN, Ms. MIKULSKI, Mr. BROWNBACK, Mr. SESSIONS, Mr. 

BIDEN, Mr. KERRY, Mr. LEAHY, Mr. CHAMBLISS, Mrs. MCCASKILL, Mr. 

LEVIN, Mr. CARPER, Mr. PRYOR, Mr. SUNUNU, and Mrs. LINCOLN) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

DECEMBER 4, 2007 

Reported by Mr. KENNEDY, with an amendment 

[Strike out all after the enacting clause and insert the part printed in italic] 

A BILL 

To amend the Public Health Service Act to provide for 

mstockstill on PROD1PC66 with BILLS

2 

•S 1382 RS

the establishment of an Amyotrophic Lateral Sclerosis 

Registry. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘ALS Registry Act’’. 

5 SEC. 2. FINDINGS. 

6 Congress makes the following findings: 

7 (1) Amyotrophic lateral sclerosis (referred to in 

8 this section as ‘‘ALS’’) is a fatal, progressive 

9 neurodegenerative disease that affects motor nerve 

10 cells in the brain and the spinal cord. 

11 (2) The average life expectancy for a person 

12 with ALS is 2 to 5 years from the time of diagnosis. 

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

14 (4) There is only one drug currently approved 

15 by the Food and Drug Administration for the treat16 ment of ALS, which has thus far shown only modest 

17 effects, prolonging life by just a few months. 

18 (5) There is no known cure for ALS. 

19 (6) More than 5,000 individuals in the United 

20 States are diagnosed with ALS annually and as 

21 many as 30,000 individuals may be living with ALS 

22 in the United States today. 

mstockstill on PROD1PC66 with BILLS

3 

•S 1382 RS

1 (7) Studies have found relationships between 

2 ALS and environmental and genetic factors, but 

3 those relationships are not well understood. 

4 (8) Scientists believe that there are significant 

5 ties between ALS and other motor neuron diseases. 

6 (9) Several ALS disease registries and data7 bases exist in the United States and throughout the 

8 world, including the SOD1 database, the National 

9 Institute of Neurological Disorders and Stroke re10 pository, and the Department of Veterans Affairs 

11 ALS Registry. 

12 (10) A single national system to collect and 

13 store information on the prevalence and incidence of 

14 ALS in the United States does not exist. 

15 (11) In each of fiscal years 2006 and 2007, 

16 Congress directed $887,000 to the Centers for Dis17 ease Control and Prevention to begin a nationwide 

18 ALS registry. 

19 (12) The Centers for Disease Control and Pre20 vention and the Agency for Toxic Substances and 

21 Disease Registry has established three pilot projects, 

22 beginning in fiscal year 2006, to evaluate the science 

23 to guide the creation of a national ALS registry. 

24 (13) The establishment of a national registry 

25 will help— 

mstockstill on PROD1PC66 with BILLS

4 

•S 1382 RS

1 (A) to identify the incidence and preva2 lence of ALS in the United States; 

3 (B) to collect data important to the study 

4 of ALS; 

5 (C) to promote a better understanding of 

6 ALS; 

7 (D) to collect information that is impor8 tant for research into the genetic and environ9 mental factors that cause ALS; 

10 (E) to strengthen the ability of a clearing11 house— 

12 (i) to collect and disseminate research 

13 findings on environmental, genetic and 

14 other causes of ALS and other motor neu15 ron disorders that can be confused with 

16 ALS, misdiagnosed as ALS, and in some 

17 cases progress to ALS; 

18 (ii) make available information to pa19 tients about research studies for which 

20 they may be eligible; and 

21 (iii) maintain information about clin22 ical specialists and clinical trials on thera23 pies; and 

24 (F) to enhance efforts to find treatments 

25 and a cure for ALS. 

mstockstill on PROD1PC66 with BILLS

5 

•S 1382 RS

1 SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE 

2 ACT. 

3 Part P of title III of the Public Health Service Act 

4 (42 U.S.C. 280g et seq.) is amended by adding at the end 

5 the following: 

6 ‘‘SEC. 399R. AMYOTROPHIC LATERAL SCLEROSIS REG7 ISTRY. 

8 ‘‘(a) ESTABLISHMENT.— 

9 ‘‘(1) IN GENERAL.—Not later than 1 year after 

10 the receipt of the report described in subsection 

11 (b)(2)(A), the Secretary, acting through the Director 

12 of the Centers for Disease Control and Prevention 

13 and in consultation with a national voluntary health 

14 organization with experience serving the population 

15 of individuals with amyotrophic lateral sclerosis (re16 ferred to in this section as ‘ALS’), shall— 

17 ‘‘(A) develop a system to collect data on 

18 ALS and other motor neuron disorders that can 

19 be confused with ALS, misdiagnosed as ALS, 

20 and in some cases progress to ALS, including 

21 information with respect to the incidence and 

22 prevalence of the disease in the United States; 

23 and 

24 ‘‘(B) establish a national registry for the 

25 collection and storage of such data to include a 

26 population-based registry of cases in the United 

mstockstill on PROD1PC66 with BILLS

6 

•S 1382 RS

1 States of ALS and other motor neuron dis2 orders that can be confused with ALS, 

3 misdiagnosed as ALS, and in some cases 

4 progress to ALS. 

5 ‘‘(2) PURPOSE.—It is the purpose of the reg6 istry established under paragraph (1)(B) to gather 

7 available data concerning— 

8 ‘‘(A) ALS, including the incidence and 

9 prevalence of ALS in the United States; 

10 ‘‘(B) the environmental and occupational 

11 factors that may be associated with the disease; 

12 ‘‘(C) the age, race or ethnicity, gender, and 

13 family history of individuals who are diagnosed 

14 with the disease; 

15 ‘‘(D) other motor neuron disorders that 

16 can be confused with ALS, misdiagnosed as 

17 ALS, and in some cases progress to ALS; and 

18 ‘‘(E) other matters as recommended by the 

19 Advisory Committee established under sub20 section (b). 

21 ‘‘(b) ADVISORY COMMITTEE.— 

22 ‘‘(1) ESTABLISHMENT.—Not later than 90 days 

23 after the date of the enactment of this section, the 

24 Secretary, acting through the Director of the Cen25 ters for Disease Control and Prevention, shall estabmstockstill on PROD1PC66 with BILLS

7 

•S 1382 RS

1 lish a committee to be known as the Advisory Com2 mittee on the National ALS Registry (referred to in 

3 this section as the ‘Advisory Committee’). The Advi4 sory Committee shall be composed of at least one 

5 member, to be appointed by the Secretary, acting 

6 through the Director of the Centers for Disease 

7 Control and Prevention, representing each of the fol8 lowing: 

9 ‘‘(A) National voluntary health associa10 tions that focus solely on ALS and have dem11 onstrated experience in ALS research, care, and 

12 patient services, as well as other voluntary asso13 ciations focusing on neurodegenerative diseases 

14 that represent and advocate on behalf of pa15 tients with ALS and patients with other motor 

16 neuron disorders that can be confused with 

17 ALS, misdiagnosed as ALS, and in some cases 

18 progress to ALS. 

19 ‘‘(B) The National Institutes of Health, to 

20 include, upon the recommendation of the Direc21 tor of the National Institutes of Health, rep22 resentatives from the National Institute of Neu23 rological Disorders and Stroke and the National 

24 Institute of Environmental Health Sciences. 

25 ‘‘(C) The Department of Veterans Affairs. 

mstockstill on PROD1PC66 with BILLS

8 

•S 1382 RS

1 ‘‘(D) The Agency for Toxic Substances 

2 and Disease Registry. 

3 ‘‘(E) The Centers for Disease Control and 

4 Prevention. 

5 ‘‘(F) Patients with ALS or their family 

6 members. 

7 ‘‘(G) Clinicians with expertise on ALS and 

8 related diseases. 

9 ‘‘(H) Epidemiologists with experience in 

10 data registries. 

11 ‘‘(I) Geneticists or experts in genetics who 

12 have experience with the genetics of ALS or 

13 other neurological diseases. 

14 ‘‘(J) Statisticians. 

15 ‘‘(K) Ethicists. 

16 ‘‘(L) Attorneys. 

17 ‘‘(M) Other individuals with an interest in 

18 developing and maintaining the National ALS 

19 Registry. 

20 ‘‘(2) DUTIES.—The Advisory Committee shall 

21 review information and make recommendations to 

22 the Secretary concerning— 

23 ‘‘(A) the development and maintenance of 

24 the National ALS Registry; 

mstockstill on PROD1PC66 with BILLS

9 

•S 1382 RS

1 ‘‘(B) the type of information to be col2 lected and stored in the Registry; 

3 ‘‘(C) the manner in which such data is to 

4 be collected; 

5 ‘‘(D) the use and availability of such data 

6 including guidelines for such use; and 

7 ‘‘(E) the collection of information about 

8 diseases and disorders that primarily affect 

9 motor neurons that are considered essential to 

10 furthering the study and cure of ALS. 

11 ‘‘(3) REPORT.—Not later than 1 years after the 

12 date on which the Advisory Committee is estab13 lished, the Advisory Committee shall submit a report 

14 concerning the review conducted under paragraph 

15 (2) that contains the recommendations of the Advi16 sory Committee with respect to the results of such 

17 review. 

18 ‘‘(c) GRANTS.—Notwithstanding the recommenda19 tions of the Advisory Committee under subsection (b), the 

20 Secretary, acting through the Director of the Centers for 

21 Disease Control and Prevention, may award grants to, and 

22 enter into contracts and cooperative agreements with, pub23 lic or private nonprofit entities for the collection, analysis, 

24 and reporting of data on ALS and other motor neuron 

mstockstill on PROD1PC66 with BILLS

10 

•S 1382 RS

1 disorders that can be confused with ALS, misdiagnosed 

2 as ALS, and in some cases progress to ALS. 

3 ‘‘(d) COORDINATION WITH STATE, LOCAL, AND FED4 ERAL REGISTRIES.— 

5 ‘‘(1) IN GENERAL.—In establishing the Na6 tional ALS Registry under subsection (a), the Sec7 retary, acting through the Director of the Centers 

8 for Disease Control and Prevention, shall— 

9 ‘‘(A) identify, build upon, expand, and co10 ordinate among existing data and surveillance 

11 systems, surveys, registries, and other Federal 

12 public health and environmental infrastructure 

13 wherever possible, including— 

14 ‘‘(i) the 3 ALS registry pilot projects 

15 initiated in fiscal year 2006 by the Centers 

16 for Disease Control and Prevention and 

17 the Agency for Toxic Substances and Dis18 ease Registry at the South Carolina Office 

19 of Research & Statistics; the Mayo Clinic 

20 in Rochester, Minnesota; and Emory Uni21 versity in Atlanta, Georgia; 

22 ‘‘(ii) the Department of Veterans Af23 fairs ALS Registry; 

24 ‘‘(iii) the DNA and Cell Line Reposi25 tory of the National Institute of Neuromstockstill on PROD1PC66 with BILLS

11 

•S 1382 RS

1 logical Disorders and Stroke Human Ge2 netics Resource Center; 

3 ‘‘(iv) Agency for Toxic Substances 

4 and Disease Registry studies, including 

5 studies conducted in Illinois, Missouri, El 

6 Paso and San Antonio, Texas, and Massa7 chusetts; 

8 ‘‘(v) State-based ALS registries, in9 cluding the Massachusetts ALS Registry; 

10 ‘‘(vi) the National Vital Statistics Sys11 tem; and 

12 ‘‘(vii) any other existing or relevant 

13 databases that collect or maintain informa14 tion on those motor neuron diseases rec15 ommended by the Advisory Committee es16 tablished in subsection (b); and 

17 ‘‘(B) provide for research access to ALS 

18 data as recommended by the Advisory Com19 mittee established in subsection (b) to the ex20 tent permitted by applicable statutes and regu21 lations and in a manner that protects personal 

22 privacy consistent with applicable privacy stat23 utes and regulations. 

24 ‘‘(2) COORDINATION WITH NIH AND DEPART25 MENT OF VETERANS AFFAIRS.—Notwithstanding the 

mstockstill on PROD1PC66 with BILLS

12 

•S 1382 RS

1 recommendations of the Advisory Committee estab2 lished in subsection (b), and consistent with applica3 ble privacy statutes and regulations, the Secretary 

4 shall ensure that epidemiological and other types of 

5 information obtained under subsection (a) is made 

6 available to the National Institutes of Health and 

7 the Department of Veterans Affairs. 

8 ‘‘(e) DEFINITION.—For the purposes of this section, 

9 the term ‘national voluntary health association’ means a 

10 national non-profit organization with chapters or other af11 filiated organizations in States throughout the United 

12 States. 

13 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—There 

14 are authorized to be appropriated to carry out this section, 

15 $25,000,000 for fiscal year 2008, and such sums as may 

16 be necessary for each of fiscal years 2009 through 2012.’’. 

17 SECTION 1. SHORT TITLE. 

18 This Act may be cited as the ‘‘ALS Registry Act’’. 

19 SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT. 

20 Part P of title III of the Public Health Service Act 

21 (42 U.S.C. 280g et seq.) is amended by adding at the end 

22 the following: 

23 ‘‘SEC. 399R. AMYOTROPHIC LATERAL SCLEROSIS REGISTRY. 

24 ‘‘(a) ESTABLISHMENT.— 

mstockstill on PROD1PC66 with BILLS

13 

•S 1382 RS

1 ‘‘(1) IN GENERAL.—Not later than 1 year after 

2 the receipt of the report described in subsection 

3 (b)(2)(A), the Secretary, acting through the Director 

4 of the Centers for Disease Control and Prevention, 

5 shall— 

6 ‘‘(A) develop a system to collect data on 

7 amyotrophic lateral sclerosis (referred to in this 

8 section as ‘ALS’) and other motor neuron dis9 orders that can be confused with ALS, 

10 misdiagnosed as ALS, and in some cases 

11 progress to ALS, including information with re12 spect to the incidence and prevalence of the dis13 ease in the United States; and 

14 ‘‘(B) establish a national registry for the 

15 collection and storage of such data to develop a 

16 population-based registry of cases in the United 

17 States of ALS and other motor neuron disorders 

18 that can be confused with ALS, misdiagnosed as 

19 ALS, and in some cases progress to ALS. 

20 ‘‘(2) PURPOSE.—It is the purpose of the registry 

21 established under paragraph (1)(B) to— 

22 ‘‘(A) better describe the incidence and prev23 alence of ALS in the United States; 

mstockstill on PROD1PC66 with BILLS

14 

•S 1382 RS

1 ‘‘(B) examine appropriate factors, such as 

2 environmental and occupational, that may be as3 sociated with the disease; 

4 ‘‘(C) better outline key demographic factors 

5 (such as age, race or ethnicity, gender, and fam6 ily history of individuals who are diagnosed 

7 with the disease) associated with the disease; 

8 ‘‘(D) better examine the connection between 

9 ALS and other motor neuron disorders that can 

10 be confused with ALS, misdiagnosed as ALS, 

11 and in some cases progress to ALS; and 

12 ‘‘(E) other matters as recommended by the 

13 Advisory Committee established under subsection 

14 (b). 

15 ‘‘(b) ADVISORY COMMITTEE.— 

16 ‘‘(1) ESTABLISHMENT.—Not later than 180 days 

17 after the date of the enactment of this section, the Sec18 retary, acting through the Director of the Centers for 

19 Disease Control and Prevention, shall establish a 

20 committee to be known as the Advisory Committee on 

21 the National ALS Registry (referred to in this section 

22 as the ‘Advisory Committee’). The Advisory Com23 mittee shall be composed of not more than 27 mem24 bers to be appointed by the Secretary, acting through 

mstockstill on PROD1PC66 with BILLS

15 

•S 1382 RS

1 the Centers for Disease Control and Prevention, of 

2 which— 

3 ‘‘(A) two-thirds of such members shall rep4 resent governmental agencies— 

5 ‘‘(i) including at least one member rep6 resenting— 

7 ‘‘(I) the National Institutes of 

8 Health, to include, upon the rec9 ommendation of the Director of the Na10 tional Institutes of Health, representa11 tives from the National Institute of 

12 Neurological Disorders and Stroke and 

13 the National Institute of Environ14 mental Health Sciences; 

15 ‘‘(II) the Department of Veterans 

16 Affairs; 

17 ‘‘(III) the Agency for Toxic Sub18 stances and Disease Registry; and 

19 ‘‘(IV) the Centers for Disease Con20 trol and Prevention; and 

21 ‘‘(ii) of which at least one such member 

22 shall be a clinician with expertise on ALS 

23 and related diseases, an epidemiologist with 

24 experience in data registries, a statistician, 

25 an ethicist, and a privacy expert (relating 

mstockstill on PROD1PC66 with BILLS

16 

•S 1382 RS

1 to the privacy regulations under the Health 

2 Insurance Portability and Accountability 

3 Act of 1996); and 

4 ‘‘(B) one-third of such members shall be 

5 public members, including at least one member 

6 representing— 

7 ‘‘(i) national and voluntary health as8 sociations; 

9 ‘‘(ii) patients with ALS or their fam10 ily members; 

11 ‘‘(iii) clinicians with expertise on ALS 

12 and related diseases; 

13 ‘‘(iv) epidemiologists with experience 

14 in data registries; 

15 ‘‘(v) geneticists or experts in genetics 

16 who have experience with the genetics of 

17 ALS or other neurological diseases and 

18 ‘‘(vi) other individuals with an interest 

19 in developing and maintaining the Na20 tional ALS Registry. 

21 ‘‘(2) DUTIES.—The Advisory Committee shall re22 view information and make recommendations to the 

23 Secretary concerning— 

24 ‘‘(A) the development and maintenance of 

25 the National ALS Registry; 

mstockstill on PROD1PC66 with BILLS

17 

•S 1382 RS

1 ‘‘(B) the type of information to be collected 

2 and stored in the Registry; 

3 ‘‘(C) the manner in which such data is to 

4 be collected; 

5 ‘‘(D) the use and availability of such data 

6 including guidelines for such use; and 

7 ‘‘(E) the collection of information about dis8 eases and disorders that primarily affect motor 

9 neurons that are considered essential to fur10 thering the study and cure of ALS. 

11 ‘‘(3) REPORT.—Not later than 270 days after the 

12 date on which the Advisory Committee is established, 

13 the Advisory Committee shall submit a report to the 

14 Secretary concerning the review conducted under 

15 paragraph (2) that contains the recommendations of 

16 the Advisory Committee with respect to the results of 

17 such review. 

18 ‘‘(c) GRANTS.—The Secretary, acting through the Di19 rector of the Centers for Disease Control and Prevention, 

20 may award grants to, and enter into contracts and coopera21 tive agreements with, public or private nonprofit entities 

22 for the collection, analysis, and reporting of data on ALS 

23 and other motor neuron disorders that can be confused with 

24 ALS, misdiagnosed as ALS, and in some cases progress to 

25 ALS after receiving the report under subsection (b)(3). 

mstockstill on PROD1PC66 with BILLS

18 

•S 1382 RS

1 ‘‘(d) COORDINATION WITH STATE, LOCAL, AND FED2 ERAL REGISTRIES.— 

3 ‘‘(1) IN GENERAL.—In establishing the National 

4 ALS Registry under subsection (a), the Secretary, 

5 acting through the Director of the Centers for Disease 

6 Control and Prevention, shall— 

7 ‘‘(A) identify, build upon, expand, and co8 ordinate among existing data and surveillance 

9 systems, surveys, registries, and other Federal 

10 public health and environmental infrastructure 

11 wherever possible, which may include— 

12 ‘‘(i) any registry pilot projects pre13 viously supported by the Centers for Disease 

14 Control and Prevention; 

15 ‘‘(ii) the Department of Veterans Af16 fairs ALS Registry; 

17 ‘‘(iii) the DNA and Cell Line Reposi18 tory of the National Institute of Neuro19 logical Disorders and Stroke Human Genet20 ics Resource Center at the National Insti21 tutes of Health; 

22 ‘‘(iv) Agency for Toxic Substances and 

23 Disease Registry studies, including studies 

24 conducted in Illinois, Missouri, El Paso and 

25 San Antonio, Texas, and Massachusetts; 

mstockstill on PROD1PC66 with BILLS

19 

•S 1382 RS

1 ‘‘(v) State-based ALS registries; 

2 ‘‘(vi) the National Vital Statistics Sys3 tem; and 

4 ‘‘(vii) any other existing or relevant 

5 databases that collect or maintain informa6 tion on those motor neuron diseases rec7 ommended by the Advisory Committee es8 tablished in subsection (b); and 

9 ‘‘(B) provide for research access to ALS 

10 data as recommended by the Advisory Committee 

11 established in subsection (b) to the extent per12 mitted by applicable statutes and regulations 

13 and in a manner that protects personal privacy 

14 consistent with applicable privacy statutes and 

15 regulations. 

16 ‘‘(2) COORDINATION WITH NIH AND DEPARTMENT

17 OF VETERANS AFFAIRS.—Consistent with applicable 

18 privacy statutes and regulations, the Secretary shall 

19 ensure that epidemiological and other types of infor20 mation obtained under subsection (a) is made avail21 able to the National Institutes of Health and the De22 partment of Veterans Affairs. 

23 ‘‘(e) DEFINITION.—For the purposes of this section, the 

24 term ‘national voluntary health association’ means a na25 tional non-profit organization with chapters or other affilimstockstill on PROD1PC66 with BILLS

20 

•S 1382 RS

1 ated organizations in States throughout the United States 

2 with experience serving the population of individuals with 

3 ALS and have demonstrated experience in ALS research, 

4 care, and patient services. 

5 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—There are 

6 authorized to be appropriated to carry out this section, 

7 $2,000,000 for fiscal year 2008, $25,000,000 for fiscal year 

8 2009, and $16,000,000 for each of fiscal years 2010 through 

9 2012.’’. 

10 SEC. 3. REPORT ON REGISTRIES. 

11 Not later than 18 months after the date of enactment 

12 of this Act, the Secretary of Health and Human Services 

13 shall submit to the appropriate committees of Congress a 

14 report outlining— 

15 (1) the registries currently under way; 

16 (2) future planned registries; 

17 (3) the criteria involved in determining what 

18 registries to conduct, defer, or suspend; and 

19 (4) the scope of those registries. 

20 The report shall also include a description of the activities 

21 the Secretary undertakes to establish partnerships with re22 search and patient advocacy communities to expand reg23 istries. 

mstockstill on PROD1PC66 with BILLS

mstockstill on PROD1PC66 with BILLS

Calendar No. 518 

110TH CONGRESS 

1ST SESSION S. 1382 

A BILL 

To amend the Public Health Service Act to provide 

Sclerosis Registry. for the establishment of an Amyotrophic Lateral 

DECEMBER 4, 2007 

Reported with an amendment 

mstockstill on PROD1PC66 with BILLS