S 425 ISCommentsClose CommentsPermalink

112th CONGRESSCommentsClose CommentsPermalink

1st SessionCommentsClose CommentsPermalink

S. 425CommentsClose CommentsPermalink

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.CommentsClose CommentsPermalink

IN THE SENATE OF THE UNITED STATESCommentsClose CommentsPermalink

March 1, 2011CommentsClose CommentsPermalink

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 PensionsCommentsClose CommentsPermalink

A BILLCommentsClose CommentsPermalink

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.CommentsClose CommentsPermalink

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,CommentsClose CommentsPermalink

SECTION 1. SHORT TITLE.

This Act may be cited as the ‘National Neurological Diseases Surveillance System Act of 2011’.CommentsClose CommentsPermalink

SEC. 2. NATIONAL NEUROLOGICAL DISEASES SURVEILLANCE SYSTEM.

Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following:CommentsClose CommentsPermalink

‘SEC. 399V-6. SURVEILLANCE OF NEUROLOGICAL DISEASES.

‘(a) In General- The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall--CommentsClose CommentsPermalink





‘(1) enhance and expand infrastructure and activities to track the epidemiology of neurological diseases, including multiple sclerosis and Parkinson’s disease; andCommentsClose CommentsPermalink





‘(2) incorporate information obtained through such activities into a statistically sound, scientifically credible, integrated surveillance system, to be known as the ‘National Neurological Diseases Surveillance System’.CommentsClose CommentsPermalink





‘(b) Research- The Secretary shall ensure that the National Neurological Diseases Surveillance System is designed in a manner that facilitates further research on neurological diseases.CommentsClose CommentsPermalink





‘(c) Content- In carrying out subsection (a), the Secretary--CommentsClose CommentsPermalink





‘(1) shall provide for the collection and storage of information on the incidence and prevalence of neurological diseases in the United States;CommentsClose CommentsPermalink





‘(2) to the extent practicable, shall provide for the collection and storage of other available information on neurological diseases, such as information concerning--CommentsClose CommentsPermalink





‘(A) demographics and other information associated or possibly associated with neurological diseases, such as age, race, ethnicity, sex, geographic location, and family history;CommentsClose CommentsPermalink





‘(B) risk factors associated or possibly associated with neurological diseases, including genetic and environmental risk factors; andCommentsClose CommentsPermalink





‘(C) diagnosis and progression markers;CommentsClose CommentsPermalink





‘(3) may provide for the collection and storage of information relevant to analysis on neurological diseases, such as information concerning--CommentsClose CommentsPermalink





‘(A) the epidemiology of the diseases;CommentsClose CommentsPermalink





‘(B) the natural history of the diseases;CommentsClose CommentsPermalink





‘(C) the prevention of the diseases;CommentsClose CommentsPermalink





‘(D) the detection, management, and treatment approaches for the diseases; andCommentsClose CommentsPermalink





‘(E) the development of outcomes measures; andCommentsClose CommentsPermalink





‘(4) may address issues identified during the consultation process under subsection (d).CommentsClose CommentsPermalink





‘(d) Consultation- In carrying out this section, the Secretary shall consult with individuals with appropriate expertise, including--CommentsClose CommentsPermalink





‘(1) epidemiologists with experience in disease surveillance or registries;CommentsClose CommentsPermalink





‘(2) representatives of national voluntary health associations that--CommentsClose CommentsPermalink





‘(A) focus on neurological diseases, including multiple sclerosis and Parkinson’s disease; andCommentsClose CommentsPermalink





‘(B) have demonstrated experience in research, care, or patient services;CommentsClose CommentsPermalink





‘(3) health information technology experts or other information management specialists;CommentsClose CommentsPermalink





‘(4) clinicians with expertise in neurological diseases; andCommentsClose CommentsPermalink





‘(5) research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes.CommentsClose CommentsPermalink





‘(e) Grants- The Secretary may award grants to, or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out activities under this section.CommentsClose CommentsPermalink





‘(f) Coordination With Other Federal Agencies- Subject to subsection (h), the Secretary shall make information and analysis in the National Neurological Diseases Surveillance System available, as appropriate, to Federal departments and agencies, such as the National Institutes of Health, the Food and Drug Administration, the Centers for Medicare & Medicaid Services, the Agency for Healthcare Research and Quality, the Department of Veterans Affairs, and the Department of Defense.CommentsClose CommentsPermalink





‘(g) Public Access- Subject to subsection (h), the Secretary shall make information and analysis in the National Neurological Diseases Surveillance System available, as appropriate, to the public, including researchers.CommentsClose CommentsPermalink





‘(h) Privacy- The Secretary shall ensure that privacy and security protections applicable to the National Neurological Diseases Surveillance System are at least as stringent as the HIPAA privacy and security law (as defined in section 3009(a)(2)).CommentsClose CommentsPermalink





‘(i) Report- Not later than 4 years after the date of the enactment of this section, the Secretary shall submit a report to Congress concerning the implementation of this section. Such report shall include information on--CommentsClose CommentsPermalink





‘(1) the development and maintenance of the National Neurological Diseases Surveillance System;CommentsClose CommentsPermalink





‘(2) the type of information collected and stored in the System;CommentsClose CommentsPermalink





‘(3) the use and availability of such information, including guidelines for such use; andCommentsClose CommentsPermalink





‘(4) the use and coordination of databases that collect or maintain information on neurological diseases.CommentsClose CommentsPermalink





‘(j) Definitions- In this section, the term ‘national voluntary health association’ means a national nonprofit organization with chapters, other affiliated organizations, or networks in States throughout the United States.CommentsClose CommentsPermalink





‘(k) Authorization of Appropriations- To carry out this section, there is authorized to be appropriated such sums as may be necessary for fiscal year 2012, and each of the 4 succeeding fiscal years.’.CommentsClose CommentsPermalink