S.Amdt. 4554

SA 4554. Mr. ISAKSON submitted an amendment intended to be proposed
by him to the bill S. 2943, to authorize appropriations for fiscal year
2017 for military activities of the Department of Defense, for military
construction, and for defense activities of the Department of Energy,
to prescribe military personnel strengths for such fiscal year, and for
other purposes; which was ordered to lie on the table; as follows:

At the end of subtitle I of title X add the following:

SEC. 1097. ADVANCING RESEARCH FOR NEUROLOGICAL DISEASES.

Part P of title III of the Public Health Service Act (42
U.S.C. 280g et seq.) is amended by inserting after section
399S, the following:

``SEC. 399S-1. ADVANCING RESEARCH FOR NEUROLOGICAL DISEASES.

``(a) In General.--The Secretary may improve the collection
of epidemiological and surveillance data on neurological
diseases (including, for purposes of this section, both
neurological diseases and neurological conditions), which may
include the incorporation of such data into a registry, to
facilitate research and improve public health, including, as
appropriate, by leveraging existing surveillance activities
and registries established under this Act.
``(b) Content.--In carrying out subsection (a), the
Secretary--
``(1) shall provide for the collection and storage of
information to better describe the incidence and prevalence
of neurological diseases in the United States identified
under paragraph (2);
``(2) shall initially identify and focus on up to five
neurological diseases that available data indicate are the
most prevalent or present a significant public health burden;
``(3) shall identify, build upon, leverage, and coordinate
among existing data and surveillance systems, surveys,
registries, and other existing Federal public health and
infrastructure wherever possible;
``(4) shall ensure that any neurological disease
surveillance activities conducted pursuant to this section,
including any such registry, are designed in a manner that
facilitates research on neurological diseases;
``(5) shall, to the extent practicable, provide for the
collection and storage of information relevant to the
identified neurological diseases, such as--
``(A) demographics, such as age, race, ethnicity, sex,
geographic location, and family history, and other
information, as appropriate;
``(B) risk factors that may be associated with certain
neurological diseases; and
``(C) diagnosis and progression markers;
``(6) may provide for the collection and storage of
additional information relevant to analysis on neurological
diseases, such as information regarding--
``(A) the natural history of the diseases;
``(B) the prevention, detection, management, and treatments
or treatment approaches for the diseases; and
``(C) the development of outcomes measures; and
``(7) may address issues identified during the consultation
process described in subsection (c).
``(c) Consultation.--In carrying out this section, the
Secretary shall consult with experts, who may include--
``(1) epidemiologists with experience in disease
surveillance or registries;
``(2) representatives of national and voluntary health
associations that focus on neurological diseases and 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 or
registries for scientific research purposes.
``(d) 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.
``(e) Coordination With Other Federal Agencies.--Consistent
with applicable privacy laws, the Secretary shall make
information and analysis pertaining to information collected
under this section available, as appropriate, to relevant
Federal departments and agencies.
``(f) Access for Biomedical Research.--The Secretary shall
make data collected under this section available for purposes
of

[[Page S3651]]

biomedical research as determined appropriate by the
Secretary, to the extent permitted by applicable laws, and in
a manner that protects personal privacy.
``(g) Reports.--
``(1) Interim report.--Not later than 1 year after the date
on which any registry is established and operational under
this section, the Secretary shall submit an interim report to
the Committee on Health, Education, Labor, and Pensions of
the Senate and the Committee on Energy and Commerce of the
House of Representatives regarding aggregate information
collected pursuant to this section and epidemiological
analyses, as appropriate. Such report shall be posted on the
Internet website of the Department of Health and Human
Services and shall be updated biennially thereafter.
``(2) Implementation report.--Not later than 4 years after
the date of the enactment of this section, the Secretary
shall submit a report to the Committee on Health, Education,
Labor, and Pensions of the Senate and the Committee on Energy
and Commerce of the House of Representatives regarding the
implementation of this section. Such report shall include
information on--
``(A) the development and maintenance of any means of
collecting neurological disease surveillance information
gathered pursuant to this section;
``(B) the type of information collected and stored;
``(C) the use and availability of such information,
including guidelines for such use; and
``(D) the use and coordination of databases that collect or
maintain information on neurological diseases.''.
______