II 

112TH CONGRESS 

1ST SESSION S. 425 

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 SENATE OF THE UNITED STATES 

MARCH 1, 2011 

Mr. UDALL of Colorado (for himself, Ms. STABENOW, Mr. ISAKSON, Mr. 

CASEY, and Mr. JOHANNS) introduced the following bill; which was read 

twice and referred to the Committee on Health, Education, Labor, and 

Pensions 

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. 

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 2011’’. 


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1 SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEIL2 LANCE SYSTEM. 

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. 399V–6. SURVEILLANCE OF NEUROLOGICAL DIS7 EASES. 

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

9 the Director of the Centers for Disease Control and Pre10 vention, shall— 

11 ‘‘(1) enhance and expand infrastructure and ac12 tivities to track the epidemiology of neurological dis13 eases, including multiple sclerosis and Parkinson’s 

14 disease; and 

15 ‘‘(2) incorporate information obtained through 

16 such activities into a statistically sound, scientifically 

17 credible, integrated surveillance system, to be known 

18 as the ‘National Neurological Diseases Surveillance 

19 System’. 

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

21 the National Neurological Diseases Surveillance System is 

22 designed in a manner that facilitates further research on 

23 neurological diseases. 

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

25 Secretary— 


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

2 of information on the incidence and prevalence of 

3 neurological diseases in the United States; 

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

5 the collection and storage of other available informa6 tion on neurological diseases, such as information 

7 concerning— 

8 ‘‘(A) demographics and other information 

9 associated or possibly associated with neuro10 logical diseases, such as age, race, ethnicity, 

11 sex, geographic location, and family history; 

12 ‘‘(B) risk factors associated or possibly as13 sociated with neurological diseases, including 

14 genetic and environmental risk factors; and 

15 ‘‘(C) diagnosis and progression markers; 

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

17 of information relevant to analysis on neurological 

18 diseases, such as information concerning— 

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

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

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

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

23 treatment approaches for the diseases; and 

24 ‘‘(E) the development of outcomes meas25 ures; and 


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

2 consultation process under subsection (d). 

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

4 the Secretary shall consult with individuals with appro5 priate expertise, including— 

6 ‘‘(1) epidemiologists with experience in disease 

7 surveillance or registries; 

8 ‘‘(2) representatives of national voluntary 

9 health associations that— 

10 ‘‘(A) focus on neurological diseases, includ11 ing multiple sclerosis and Parkinson’s disease; 

12 and 

13 ‘‘(B) have demonstrated experience in re14 search, care, or patient services; 

15 ‘‘(3) health information technology experts or 

16 other information management specialists; 

17 ‘‘(4) clinicians with expertise in neurological 

18 diseases; and 

19 ‘‘(5) research scientists with experience con20 ducting translational research or utilizing surveil21 lance systems for scientific research purposes. 

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

23 or enter into contracts or cooperative agreements with, 

24 public or private nonprofit entities to carry out activities 

25 under this section. 


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1 ‘‘(f) COORDINATION WITH OTHER FEDERAL AGEN2 CIES.—Subject to subsection (h), the Secretary shall make 

3 information and analysis in the National Neurological Dis4 eases Surveillance System available, as appropriate, to 

5 Federal departments and agencies, such as the National 

6 Institutes of Health, the Food and Drug Administration, 

7 the Centers for Medicare & Medicaid Services, the Agency 

8 for Healthcare Research and Quality, the Department of 

9 Veterans Affairs, and the Department of Defense. 

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

11 Secretary shall make information and analysis in the Na12 tional Neurological Diseases Surveillance System avail13 able, as appropriate, to the public, including researchers. 

14 ‘‘(h) PRIVACY.—The Secretary shall ensure that pri15 vacy and security protections applicable to the National 

16 Neurological Diseases Surveillance System are at least as 

17 stringent as the HIPAA privacy and security law (as de18 fined in section 3009(a)(2)). 

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

20 of the enactment of this section, the Secretary shall sub21 mit a report to Congress concerning the implementation 

22 of this section. Such report shall include information on— 

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

24 National Neurological Diseases Surveillance System; 


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

2 stored in the System; 

3 ‘‘(3) the use and availability of such informa4 tion, including guidelines for such use; and 

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

6 collect or maintain information on neurological dis7 eases. 

8 ‘‘(j) DEFINITIONS.—In this section, the term ‘na9 tional voluntary health association’ means a national non10 profit organization with chapters, other affiliated organi11 zations, or networks in States throughout the United 

12 States. 

13 ‘‘(k) AUTHORIZATION OF APPROPRIATIONS.—To 

14 carry out this section, there is authorized to be appro15 priated such sums as may be necessary for fiscal year 

16 2012, and each of the 4 succeeding fiscal years.’’. 

Æ 


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