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
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.
This Act may be cited as
National Neurological Diseases
Surveillance System Act of 2011.
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:
Surveillance of neurological diseases
The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall—
enhance and expand infrastructure and activities to track the epidemiology of neurological diseases, including multiple sclerosis and Parkinson's disease; and
information obtained through such activities into a statistically sound,
scientifically credible, integrated surveillance system, to be known as the
National Neurological Diseases Surveillance System.
The Secretary shall ensure that the National Neurological Diseases Surveillance System is designed in a manner that facilitates further research on neurological diseases.
In carrying out subsection (a), the Secretary—
shall provide for the collection and storage of information on the incidence and prevalence of neurological diseases in the United States;
to the extent practicable, shall provide for the collection and storage of other available information on neurological diseases, such as information concerning—
demographics and other information associated or possibly associated with neurological diseases, such as age, race, ethnicity, sex, geographic location, and family history;
risk factors associated or possibly associated with neurological diseases, including genetic and environmental risk factors; and
diagnosis and progression markers;
may provide for the collection and storage of information relevant to analysis on neurological diseases, such as information concerning—
the epidemiology of the diseases;
the natural history of the diseases;
the prevention of the diseases;
the detection, management, and treatment approaches for the diseases; and
the development of outcomes measures; and
may address issues identified during the consultation process under subsection (d).
In carrying out this section, the Secretary shall consult with individuals with appropriate expertise, including—
epidemiologists with experience in disease surveillance or registries;
representatives of national voluntary health associations that—
focus on neurological diseases, including multiple sclerosis and Parkinson's disease; and
have demonstrated experience in research, care, or patient services;
health information technology experts or other information management specialists;
clinicians with expertise in neurological diseases; and
research scientists with experience conducting translational research or utilizing surveillance systems for scientific research purposes.
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.
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.
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.
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)).
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—
the development and maintenance of the National Neurological Diseases Surveillance System;
the type of information collected and stored in the System;
the use and availability of such information, including guidelines for such use; and
the use and coordination of databases that collect or maintain information on neurological diseases.
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.
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.