(7) In order to take full advantage of the tre-
mendous potential for finding a cure or effective
treatment, the Federal investment in Parkinson’s
must be expanded, as well as the coordination
strengthened among the National Institutes of
Health research institutes.
(b) PURPOSE.—It is the purpose of this Act to pro-
vide for the expansion and coordination of research con-
cerning Parkinson’s, and to improve care and assistance
for afflicted individuals and their family caregivers.
SEC. 3. BIOMEDICAL RESEARCH ON PARKINSON’S DISEASE.
Part B of title IV of the Public Health Service Act
(42 U.S.C. 284 et seq.) is amended by adding at the end
the following section:
‘‘PARKINSON’S DISEASE
‘‘SEC. 409B. (a) IN GENERAL.—The Director of
NIH shall establish a program for the conduct and sup-
port of research and training, the dissemination of health
information, and other programs with respect to Parkin-
son’s disease.
‘‘(b) INTERAGENCY COORDINATING COMMITTEE.—
‘‘(1) IN GENERAL.—The Director of NIH shall
establish a committee to be known as the Inter-
agency Coordinating Committee on Parkinson’s Dis-
ease (in this subsection referred to as the ‘Coordi-
nating Committee’).
‘‘(2) DUTIES.—With respect to Parkinson’s, the
Coordinating Committee shall—
‘‘(A) provide for the coordination of the ac-
tivities of the national research institutes; and
‘‘(B) coordinate the aspects of all Federal
health programs and activities relating to Par-
kinson’s in order to assure the adequacy, effec-
tiveness, and technical soundness of such pro-
grams and activities and in order to provide for
the full communication and exchange of infor-
mation necessary to maintain adequate coordi-
nation of such programs and activities.
‘‘(3) COMPOSITION.—The Coordinating Com-
mittee shall be composed of—
‘‘(A) the directors of each of the national
research institutes and other agencies involved
in research with respect to Parkinson’s;
‘‘(B) one representative of the relevant
Federal departments and agencies whose pro-
grams involve health functions or responsibil-
ities relevant to such disease;
‘‘(C) individuals with the disease and indi-
viduals who have a family history with the dis-
ease; and
‘‘(D) health professionals or allied health
professionals.
‘‘(4) CHAIR.—The Coordinating Committee
shall be chaired by the Director of NIH (or the des-
ignee of the Director). The Committee shall meet at
the call of the chair, but not less often than once
each year.
‘‘(5) ANNUAL
REPORT.—Not later than 120
days after the end of each fiscal year, the Coordinat-
ing Committee shall prepare and submit to the Sec-
retary, the Director of NIH, and the directors speci-
fied in paragraph (3)(A) a report detailing the ac-
tivities of the Committee in such fiscal year in carry-
ing out paragraph (2).
‘‘(c) MORRIS K. UDALL RESEARCH CENTERS.—
‘‘(1) IN GENERAL.—The Director of NIH shall
award Core Center Grants to encourage the develop-
ment of innovative multidisciplinary research and
provide training concerning Parkinson’s. The Direc-
tor shall award not more than 10 Core Center
Grants and designate each center funded under such
grants as a Morris K. Udall Center for Research on
Parkinson’s Disease.
‘‘(2) REQUIREMENTS.—
‘‘(A) IN GENERAL.—With respect to Par-
kinson’s, each center assisted under this sub-
section shall—
‘‘(i) use the facilities of a single insti-
tution or a consortium of cooperating insti-
tutions, and meet such qualifications as
may be prescribed by the Director of the
NIH; and
‘‘(ii) conduct basic and clinical re-
search and provide patient care services.
‘‘(B) DISCRETIONARY
REQUIREMENTS.—
With respect to Parkinson’s, each center as-
sisted under this subsection may—
‘‘(i) conduct training programs for
scientists and health professionals;
‘‘(ii) conduct programs to provide in-
formation and continuing education to
health professionals;
‘‘(iii) conduct programs for the dis-
semination of information to the public;
and
‘‘(iv) develop and maintain, where ap-
propriate, a brain bank to collect speci-
mens related to the research and treatment
of Parkinson’s.
‘‘(3) STIPENDS
REGARDING
TRAINING
PRO-
GRAMS.—A center may use funds provided under
paragraph (1) to provide stipends for scientists and
health professionals enrolled in training programs
under paragraph (2)(C).
‘‘(4) DURATION
OF
SUPPORT.—Support of a
center under this subsection may be for a period not
exceeding five years. Such period may be extended
by the Director of NIH for one or more additional
periods of not more than five years if the operations
of such center have been reviewed by an appropriate
technical and scientific peer review group established
by the Director and if such group has recommended
to the Director that such period should be extended.
‘‘(d) DATA
SYSTEM; INFORMATION
CLEARING-
HOUSE.—
‘‘(1) DATA
SYSTEM.—The Director of NIH
shall establish the National Parkinson’s Disease
Data System for the collection, storage, analysis, re-
trieval, and dissemination of data derived from pa-
tient populations with such disease, including, where
possible, data involving general populations for the
purpose of detection of individuals with a risk of de-
veloping the disease.
‘‘(2) INFORMATION CLEARINGHOUSE.—The Di-
rector of NIH shall establish the National Parkin-
son’s Disease Information Clearinghouse to facilitate
and enhance knowledge and understanding of such
disease on the part of health professionals, patients,
and the public through the effective dissemination of
information.
‘‘(e) MORRIS K. UDALL LEADERSHIP AND EXCEL-
LENCE AWARDS.—The Director of NIH shall establish a
grant program to support scientists who have distin-
guished themselves in the field of Parkinson’s research.
Grants under this subsection shall be utilized to enable
established investigators to devote greater time and re-
sources in laboratories to conduct research on Parkinson’s
and to encourage the development of a new generation of
investigators, with the support and guidance of the most
productive and innovative senior researchers.
‘‘(f) NATIONAL PARKINSON’S DISEASE EDUCATION
PROGRAM.—The Director of NIH shall establish a na-
tional education program that is designed to foster a na-
tional focus on Parkinson’s and the care of those with Par-
kinson’s. Activities under such program shall include—
‘‘(1) the bringing together of public and private
organizations to develop better ways to provide care
to individuals with Parkinson’s, and assist the fami-
lies of such individuals; and
‘‘(2) the provision of technical assistance to
public and private organizations that offer support
and aid to individuals with Parkinson’s and their
families.
‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—
‘‘(1) IN GENERAL.—For the purpose of carry-
ing out this section, there are authorized to be ap-
propriated $100,000,000 for fiscal year 1996, and
such sums as may be necessary for each of the fiscal
years 1997 through 2000.
‘‘(2) AVAILABILITY.—Of the amount appro-
priated under paragraph (1), the Secretary shall
make available not to exceed $10,000,000 for fiscal
year 1996, and such sums as may be necessary for
each of the fiscal years 1997 through 2000, to es-
tablish Morris K. Udall Centers under subsection
(c).’’.
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