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Union Calendar No. 376 

111TH CONGRESS 

2D SESSION H. R. 1362 

[Report No. 111–636] 

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

of permanent national surveillance systems for multiple sclerosis, Parkinson’s disease, and other neurological diseases and disorders. 

IN THE HOUSE OF REPRESENTATIVES 

MARCH 5, 2009 

Mr. VAN HOLLEN (for himself, Mr. BURGESS, Mrs. MALONEY, Mr. UPTON, 

Mr. CARNAHAN, and Mr. KING of New York) introduced the following 

bill; which was referred to the Committee on Energy and Commerce 

SEPTEMBER 28, 2010 

Additional sponsors: Ms. LEE of California, Mr. TAYLOR, Mr. BISHOP of 

Georgia, Mrs. LUMMIS, Mrs. EMERSON, Mr. ANDREWS, Mr. BOUCHER, 

Mr. MORAN of Virginia, Ms. BORDALLO, Ms. HIRONO, Mr. MCGOVERN, 

Mr. FARR, Mr. DEFAZIO, Mr. SIRES, Mr. KUCINICH, Mr. GORDON of 

Tennessee, Mr. MCDERMOTT, Mr. WELCH, Mr. CONNOLLY of Virginia, 

Mr. OBERSTAR, Mr. LEWIS of Georgia, Mr. WOLF, Ms. KILPATRICK of 

Michigan, Mr. HINOJOSA, Ms. ESHOO, Mr. WALDEN, Mr. JONES, Mr. 

BOSWELL, Mr. SPRATT, Mr. JOHNSON of Georgia, Mr. PATRICK J. MURPHY of Pennsylvania, Ms. KAPTUR, Mr. YARMUTH, Mr. ROGERS of Alabama, Mr. CARSON of Indiana, Mr. HOLDEN, Mr. SERRANO, Mr. 

WITTMAN, Mr. ROTHMAN of New Jersey, Ms. BALDWIN, Mr. 

RUPPERSBERGER, Ms. SCHAKOWSKY, Mr. BUCHANAN, Mr. TERRY, Mr. 

CULBERSON, Mr. YOUNG of Alaska, Mr. MORAN of Kansas, Mr. BACHUS, 

Mr. GEORGE MILLER of California, Ms. LINDA T. SA ́NCHEZ of California, Mr. SESTAK, Mr. RUSH, Mr. SPACE, Ms. SCHWARTZ, Mr. DAVIS

of Alabama, Mrs. SCHMIDT, Mr. GERLACH, Mr. CLEAVER, Mr. HARE, 

Mr. LEE of New York, Ms. FUDGE, Mr. PUTNAM, Ms. CASTOR of Florida, Mr. LEVIN, Mr. FORTENBERRY, Ms. WOOLSEY, Mr. MCCARTHY of 

California, Mr. MITCHELL, Mr. BOYD, Mr. LATHAM, Ms. DEGETTE, Mr. 

SOUDER, Mr. DONNELLY of Indiana, Mr. PLATTS, Mr. ROSS, Mrs. 

BLACKBURN, Mr. COHEN, Mrs. CAPPS, Mr. ABERCROMBIE, Mr. 

ALTMIRE, Mr. FILNER, Mr. ELLISON, Mr. COBLE, Mr. FORBES, Ms. 


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ROYBAL-ALLARD, Mr. PETERSON, Mr. GENE GREEN of Texas, Mr. 

DAVIS of Illinois, Mr. DICKS, Mr. HOLT, Mr. HIMES, Mr. KENNEDY, Mr. 

KLEIN of Florida, Mr. PASCRELL, Mr. GALLEGLY, Mr. REICHERT, Mr. 

SESSIONS, Mr. HARPER, Mr. INSLEE, Ms. WASSERMAN SCHULTZ, Mr. 

SNYDER, Mr. REHBERG, Mrs. BIGGERT, Mr. MILLER of North Carolina, 

Mr. YOUNG of Florida, Mr. CAO, Mr. HODES, Mr. MCCOTTER, Mr. 

TURNER, Mr. CRENSHAW, Ms. BERKLEY, Ms. MATSUI, Mr. DRIEHAUS, 

Mr. POSEY, Mr. BISHOP of New York, Ms. DELAURO, Mr. BAIRD, Mr. 

LANGEVIN, Mr. LIPINSKI, Mr. LINCOLN DIAZ-BALART of Florida, Mr. 

EHLERS, Mr. BERMAN, Mr. MURPHY of Connecticut, Mr. WILSON of 

South Carolina, Mr. BRALEY of Iowa, Mr. WU, Mr. LOBIONDO, Mr. 

MOORE of Kansas, Mr. HONDA, Mr. MANZULLO, Mr. LATOURETTE, Mr. 

GONZALEZ, Mr. BOCCIERI, Mr. MCNERNEY, Mr. OLVER, Mr. PRICE of 

North Carolina, Mr. BOOZMAN, Mr. SCHIFF, Mr. KIRK, Mr. ROE of Tennessee, Mrs. DAVIS of California, Mr. TIBERI, Mr. THOMPSON of California, Mr. HINCHEY, Ms. MCCOLLUM, Mr. CALVERT, Mr. STARK, Mr. 

MASSA, Mr. FRANK of Massachusetts, Mr. HALL of New York, Mr. 

THORNBERRY, Ms. KOSMAS, Mr. SCOTT of Virginia, Mr. MILLER of Florida, Mr. AUSTRIA, Mr. BLUNT, Mr. MARKEY of Massachusetts, Mr. 

MICHAUD, Mr. MARSHALL, Mr. GINGREY of Georgia, Mr. BOREN, Mr. 

TOWNS, Mr. CASTLE, Mr. CHAFFETZ, Mr. WEINER, Ms. NORTON, Mr. 

PITTS, Mr. KLINE of Minnesota, Ms. LORETTA SANCHEZ of California, 

Mr. MELANCON, Mr. FRELINGHUYSEN, Mr. MATHESON, Ms. SUTTON, 

Ms. MOORE of Wisconsin, Mr. NYE, Mr. HEINRICH, Mr. DEUTCH, Mr. 

BLUMENAUER, Mr. GUTHRIE, Mr. TIAHRT, Mr. NADLER of New York, 

Mrs. MCMORRIS RODGERS, Mr. SCHOCK, Ms. PINGREE of Maine, Mr. 

COSTA, Mr. FATTAH, Ms. EDWARDS of Maryland, Ms. CLARKE, Mrs. 

DAHLKEMPER, Mr. HIGGINS, Mrs. CHRISTENSEN, Mr. THOMPSON of 

Mississippi, Mrs. NAPOLITANO, Mr. LARSEN of Washington, Mr. 

LUETKEMEYER, Mr. COSTELLO, Mr. WILSON of Ohio, Mr. GRAVES of 

Missouri, Mr. KISSELL, Ms. SPEIER, and Mr. DENT

SEPTEMBER 28, 2010 

Reported with an amendment, committed to the Committee of the Whole 

House on the State of the Union, and ordered to be printed 

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

[For text of introduced bill, see copy of bill as introduced on March 5, 2009] 

A BILL 

To amend the Public Health Service Act to provide for 

the establishment of permanent national surveillance systems for multiple sclerosis, Parkinson’s disease, and 

other neurological diseases and disorders. 


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•HR 1362 RH

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 ‘‘National Neurological 

5 Diseases Surveillance System Act of 2010’’. 

6 SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEIL7 LANCE SYSTEM. 

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

9 (42 U.S.C. 280g et seq.) is amended by adding at the end 

10 the following: 

11 ‘‘SEC. 399V–5 SURVEILLANCE OF NEUROLOGICAL DISEASES. 

12 ‘‘(a) IN GENERAL.—The Secretary, acting through the 

13 Director of the Centers for Disease Control and Prevention, 

14 shall— 

15 ‘‘(1) enhance and expand infrastructure and ac16 tivities to track the epidemiology of neurological dis17 eases, including multiple sclerosis and Parkinson’s 

18 disease; and 

19 ‘‘(2) incorporate information obtained through 

20 such activities into a statistically-sound, scientif21 ically-credible, integrated surveillance system, to be 

22 known as the National Neurological Diseases Surveil23 lance System. 

24 ‘‘(b) RESEARCH.—The Secretary shall ensure that the 

25 National Neurological Diseases Surveillance System is deVerDate Mar 15 2010 00:08 Sep 29, 2010 Jkt 089200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6203 E:\BILLS\H1362.RH H1362

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1 signed in a manner that facilitates further research on neu2 rological diseases. 

3 ‘‘(c) CONTENT.—In carrying out subsection (a), the 

4 Secretary— 

5 ‘‘(1) shall provide for the collection and storage 

6 of information on the incidence and prevalence of 

7 neurological diseases in the United States; 

8 ‘‘(2) to the extent practicable, shall provide for 

9 the collection and storage of other available informa10 tion on neurological diseases, such as information 

11 concerning— 

12 ‘‘(A) demographics and other information 

13 associated or possibly associated with neuro14 logical diseases, such as age, race, ethnicity, sex, 

15 geographic location, and family history; 

16 ‘‘(B) risk factors associated or possibly asso17 ciated with neurological diseases, including ge18 netic and environmental risk factors; and 

19 ‘‘(C) diagnosis and progression markers; 

20 ‘‘(3) may provide for the collection and storage 

21 of information relevant to analysis on neurological 

22 diseases, such as information concerning— 

23 ‘‘(A) the epidemiology of the diseases; 

24 ‘‘(B) the natural history of the diseases; 

25 ‘‘(C) the prevention of the diseases; 


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1 ‘‘(D) the detection, management, and treat2 ment approaches for the diseases; and 

3 ‘‘(E) the development of outcomes measures; 

4 and 

5 ‘‘(4) may address issues identified during the 

6 consultation process under subsection (d). 

7 ‘‘(d) CONSULTATION.—In carrying out this section, the 

8 Secretary shall consult with individuals with appropriate 

9 expertise, including— 

10 ‘‘(1) epidemiologists with experience in disease 

11 surveillance or registries; 

12 ‘‘(2) representatives of national voluntary health 

13 associations that— 

14 ‘‘(A) focus on neurological diseases, includ15 ing multiple sclerosis and Parkinson’s disease; 

16 and 

17 ‘‘(B) have demonstrated experience in re18 search, care, or patient services; 

19 ‘‘(3) health information technology experts or 

20 other information management specialists; 

21 ‘‘(4) clinicians with expertise in neurological 

22 diseases; and 

23 ‘‘(5) research scientists with experience con24 ducting translational research or utilizing surveil25 lance systems for scientific research purposes. 


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1 ‘‘(e) GRANTS.—The Secretary may award grants to, 

2 or enter into contracts or cooperative agreements with, pub3 lic or private nonprofit entities to carry out activities under 

4 this section. 

5 ‘‘(f) COORDINATION WITH OTHER FEDERAL AGEN6 CIES.—Subject to subsection (h), the Secretary shall make 

7 information and analysis in the National Neurological Dis8 eases Surveillance System available, as appropriate, to Fed9 eral departments and agencies, such as the National Insti10 tutes of Health, the Food and Drug Administration, the 

11 Centers for Medicare & Medicaid Services, the Agency for 

12 Healthcare Research and Quality, the Department of Vet13 erans Affairs, and the Department of Defense. 

14 ‘‘(g) PUBLIC ACCESS.—Subject to subsection (h), the 

15 Secretary shall make information and analysis in the Na16 tional Neurological Diseases Surveillance System available, 

17 as appropriate, to the public, including researchers. 

18 ‘‘(h) PRIVACY.—The Secretary shall ensure that pri19 vacy and security protections applicable to the National 

20 Neurological Diseases Surveillance System are at least as 

21 stringent as the privacy and security protections under 

22 HIPAA privacy and security law (as defined in section 

23 3009(a)(2)). 

24 ‘‘(i) REPORT.—Not later than 4 years after the date 

25 of the enactment of this section, the Secretary shall submit 


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1 a report to the Congress concerning the implementation of 

2 this section. Such report shall include information on— 

3 ‘‘(1) the development and maintenance of the 

4 National Neurological Diseases Surveillance System; 

5 ‘‘(2) the type of information collected and stored 

6 in the System; 

7 ‘‘(3) the use and availability of such informa8 tion, including guidelines for such use; and 

9 ‘‘(4) the use and coordination of databases that 

10 collect or maintain information on neurological dis11 eases. 

12 ‘‘(j) DEFINITION.—In this section, the term ‘national 

13 voluntary health association’ means a national nonprofit 

14 organization with chapters, other affiliated organizations, 

15 or networks in States throughout the United States. 

16 ‘‘(k) AUTHORIZATION OF APPROPRIATIONS.—To carry 

17 out this section, there is authorized to be appropriated 

18 $5,000,000 for each of fiscal years 2012 through 2016.’’. 


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Union Calendar No. 376 

111TH CONGRESS 

2D SESSION H. R. 1362 

[Report No. 111–636] 

A BILL 

To amend the Public Health Service Act to provide 

disorders. son’s disease, and other neurological diseases and veillance systems for multiple sclerosis, Parkinfor the establishment of permanent national surSEPTEMBER 28, 2010 

Reported with an amendment, committed to the Comand ordered to be printed mittee of the Whole House on the State of the Union, 


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