IIB 

111TH CONGRESS 

2D SESSION H. R. 1362 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 29, 2010 

Received; read twice and referred to the Committee on Health, Education, 

Labor, and Pensions 

AN ACT 

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. 

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


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘National Neurological 

3 Diseases Surveillance System Act of 2010’’. 

4 SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEIL5 LANCE SYSTEM. 

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

7 (42 U.S.C. 280g et seq.) is amended by adding at the end 

8 the following: 

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

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

11 the Director of the Centers for Disease Control and Pre12 vention, shall— 

13 ‘‘(1) enhance and expand infrastructure and ac14 tivities to track the epidemiology of neurological dis15 eases, including multiple sclerosis and Parkinson’s 

16 disease; and 

17 ‘‘(2) incorporate information obtained through 

18 such activities into a statistically-sound, scientif19 ically-credible, integrated surveillance system, to be 

20 known as the National Neurological Diseases Sur21 veillance System. 

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

23 the National Neurological Diseases Surveillance System is 

24 designed in a manner that facilitates further research on 

25 neurological diseases. 


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

2 Secretary— 

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

4 of information on the incidence and prevalence of 

5 neurological diseases in the United States; 

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

7 the collection and storage of other available informa8 tion on neurological diseases, such as information 

9 concerning— 

10 ‘‘(A) demographics and other information 

11 associated or possibly associated with neuro12 logical diseases, such as age, race, ethnicity, 

13 sex, geographic location, and family history; 

14 ‘‘(B) risk factors associated or possibly as15 sociated with neurological diseases, including 

16 genetic and environmental risk factors; and 

17 ‘‘(C) diagnosis and progression markers; 

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

19 of information relevant to analysis on neurological 

20 diseases, such as information concerning— 

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

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

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

24 ‘‘(D) the detection, management, and 

25 treatment approaches for the diseases; and 


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1 ‘‘(E) the development of outcomes meas2 ures; and 

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

4 consultation process under subsection (d). 

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

6 the Secretary shall consult with individuals with appro7 priate expertise, including— 

8 ‘‘(1) epidemiologists with experience in disease 

9 surveillance or registries; 

10 ‘‘(2) representatives of national voluntary 

11 health associations that— 

12 ‘‘(A) focus on neurological diseases, includ13 ing multiple sclerosis and Parkinson’s disease; 

14 and 

15 ‘‘(B) have demonstrated experience in re16 search, care, or patient services; 

17 ‘‘(3) health information technology experts or 

18 other information management specialists; 

19 ‘‘(4) clinicians with expertise in neurological 

20 diseases; and 

21 ‘‘(5) research scientists with experience con22 ducting translational research or utilizing surveil23 lance systems for scientific research purposes. 

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

25 or enter into contracts or cooperative agreements with, 


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1 public or private nonprofit entities to carry out activities 

2 under this section. 

3 ‘‘(f) COORDINATION WITH OTHER FEDERAL AGEN4 CIES.—Subject to subsection (h), the Secretary shall make 

5 information and analysis in the National Neurological Dis6 eases Surveillance System available, as appropriate, to 

7 Federal departments and agencies, such as the National 

8 Institutes of Health, the Food and Drug Administration, 

9 the Centers for Medicare & Medicaid Services, the Agency 

10 for Healthcare Research and Quality, the Department of 

11 Veterans Affairs, and the Department of Defense. 

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

13 Secretary shall make information and analysis in the Na14 tional Neurological Diseases Surveillance System avail15 able, as appropriate, to the public, including researchers. 

16 ‘‘(h) PRIVACY.—The Secretary shall ensure that pri17 vacy and security protections applicable to the National 

18 Neurological Diseases Surveillance System are at least as 

19 stringent as the privacy and security protections under 

20 HIPAA privacy and security law (as defined in section 

21 3009(a)(2)). 

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

23 of the enactment of this section, the Secretary shall sub24 mit a report to the Congress concerning the implementaVerDate Mar 15 2010 00:57 Oct 01, 2010 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1362.RFS H1362

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1 tion of this section. Such report shall include information 

2 on— 

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

4 National Neurological Diseases Surveillance System; 

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

6 stored 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 

17 carry out this section, there is authorized to be appro18 priated $5,000,000 for each of fiscal years 2012 through 

19 2016.’’. 

Passed the House of Representatives September 28, 

2010. 

Attest: LORRAINE C. MILLER, 

Clerk. 


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