1.This Act may be cited as the
National Neurological Diseases
Surveillance System Act of 2010
.
2.National
neurological diseases surveillance systemPart 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:
399V–5Surveillance
of neurological diseases
(a)The Secretary, acting through the Director of the Centers
for Disease Control and Prevention, shall—
(1)enhance and expand
infrastructure and activities to track the epidemiology of neurological
diseases, including multiple sclerosis and Parkinson’s disease; and
(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.
(b)The
Secretary shall ensure that the National Neurological Diseases Surveillance
System is designed in a manner that facilitates further research on
neurological diseases.
(c)In
carrying out subsection (a), the Secretary—
(1)shall provide for
the collection and storage of information on the incidence and prevalence of
neurological diseases in the United States;
(2)to the extent
practicable, shall provide for the collection and storage of other available
information on neurological diseases, such as information concerning—
(A)demographics and
other information associated or possibly associated with neurological diseases,
such as age, race, ethnicity, sex, geographic location, and family
history;
(B)risk factors
associated or possibly associated with neurological diseases, including genetic
and environmental risk factors; and
(C)diagnosis and
progression markers;
(3)may provide for the collection and storage
of information relevant to analysis on neurological diseases, such as
information concerning—
(A)the epidemiology
of the diseases;
(B)the natural
history of the diseases;
(C)the prevention of
the diseases;
(D)the detection,
management, and treatment approaches for the diseases; and
(E)the development of
outcomes measures; and
(4)may address issues
identified during the consultation process under subsection (d).
(d)In
carrying out this section, the Secretary shall consult with individuals with
appropriate expertise, including—
(1)epidemiologists
with experience in disease surveillance or registries;
(2)representatives of
national voluntary health associations that—
(A)focus on
neurological diseases, including multiple sclerosis and Parkinson’s disease;
and
(B)have demonstrated
experience in research, care, or patient services;
(3)health information
technology experts or other information management specialists;
(4)clinicians with
expertise in neurological diseases; and
(5)research
scientists with experience conducting translational research or utilizing
surveillance systems for scientific research purposes.
(e)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.
(f)Coordination
with other Federal agenciesSubject 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.
(g)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.
(h)The Secretary shall ensure that privacy and
security protections applicable to the National Neurological Diseases
Surveillance System are at least as stringent as the privacy and security
protections under HIPAA privacy and security law (as defined in section
3009(a)(2)).
(i)Not
later than 4 years after the date of the enactment of this section, the
Secretary shall submit a report to the Congress concerning the implementation
of this section. Such report shall include information on—
(1)the development
and maintenance of the National Neurological Diseases Surveillance
System;
(2)the type of
information collected and stored in the System;
(3)the use and
availability of such information, including guidelines for such use; and
(4)the use and
coordination of databases that collect or maintain information on neurological
diseases.
(j)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.
(k)Authorization of
appropriationsTo carry out this section, there is authorized to
be appropriated $5,000,000 for each of fiscal years 2012 through
2016.
.
Passed the House of
Representatives September 28, 2010.
Lorraine C. Miller,
Clerk.