I

104TH CONGRESS

2D SESSION H. R. 3514

To amend the Public Health Service Act to provide for programs of research

regarding Parkinson’s disease, and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

MAY 22, 1996

Mr. SMITH of the New Jersey (for himself, Mr. VOLKMER, and Mr. FLANAGAN) introduced the following bill; which was referred to the Committee

on Commerce

A BILL

To amend the Public Health Service Act to provide for

programs of research regarding Parkinson’s disease, and

for other purposes.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE.

4 This Act may be cited as the ‘‘Parkinson’s Research,

5 Assistance, and Education Act of 1996’’.

6 SEC. 2. FINDINGS AND PURPOSE.

7 (a) FINDINGS.—The Congress finds that—
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1 (1) Parkinson’s disease and related disorders

2 are neurological disorders affecting over 1,000,000

3 Americans; and

4 (2) approximately $28,000,000 in Federal

5 funds was allocated by the National Institutes of

6 Health in fiscal year 1995 for research specifically

7 on Parkinson’s disease.

8 (b) PURPOSE.—It is the purpose of this Act to pro9 vide for the expansion and coordination of research con10 cerning Parkinson’s disease and related disorders, to im11 prove care and assistance for afflicted individuals and

12 their families, and to improve public awareness about such

13 conditions.

14 SEC. 3. BIOMEDICAL RESEARCH ON PARKINSON’S DISEASE.

15 Part B of title IV of the Public Health Service Act

16 (42 U.S.C. 284 et seq.) is amended by adding at the end

17 the following section:

18 ‘‘PARKINSON’S DISEASE

19 ‘‘SEC. 409B. (a) IN GENERAL.—The Director of

20 NIH shall establish a program for the conduct and sup21 port of research and training, the dissemination of health

22 information, and other programs with respect to Parkin23 son’s disease and related disorders (in this section referred

24 to as Parkinson’s).

25 ‘‘(b) INTERAGENCY COORDINATING COMMITTEE.—
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1 ‘‘(1) IN GENERAL.—The Director of NIH shall

2 establish a committee to be known as the Inter3 agency Coordinating Committee on Parkinson’s Dis4 ease (in this subsection referred to as the ‘Coordi5 nating Committee’).

6 ‘‘(2) DUTIES.—With respect to Parkinson’s, the

7 Coordinating Committee shall—

8 ‘‘(A) provide for the coordination of the ac9 tivities of the national research institutes; and

10 ‘‘(B) coordinate the aspects of all Federal

11 health programs and activities relating to Par12 kinson’s in order to assure the adequacy, effec13 tiveness, and technical soundness of such pro14 grams and activities and in order to provide for

15 the full communication and exchange of infor16 mation necessary to maintain adequate coordi17 nation of such programs and activities.

18 ‘‘(3) COMPOSITION.—The Coordinating Com19 mittee shall be composed of—

20 ‘‘(A) the directors of each of the national

21 research institutes and other agencies involved

22 in research with respect to Parkinson’s;

23 ‘‘(B) one representative of the relevant

24 Federal departments and agencies whose pro-
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1 grams involve health functions or responsibil2 ities relevant to such disease;

3 ‘‘(C) individuals with the disease and indi4 viduals who have a family history with the dis5 ease; and

6 ‘‘(D) health professionals or allied health

7 professionals.

8 ‘‘(4) CHAIR.—The Coordinating Committee

9 shall be chaired by the Director of NIH (or the des10 ignee of the Director). The Committee shall meet at

11 the call of the chair, but not less often than once

12 each year.

13 ‘‘(5) ANNUAL REPORT.—Not later than 120

14 days after the end of each fiscal year, the Coordinat15 ing Committee shall prepare and submit to the Sec16 retary, the Director of NIH, and the directors speci17 fied in paragraph (3)(A) a report detailing the ac18 tivities of the Committee in such fiscal year in carry19 ing out paragraph (2).

20 ‘‘(c) MORRIS K. UDALL RESEARCH CENTERS.—

21 ‘‘(1) IN GENERAL.—The Director of NIH shall

22 award Core Center Grants to encourage the develop23 ment of innovative multidisciplinary research and

24 provide training concerning Parkinson’s. The Direc25 tor shall award not more than 10 Core Center
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1 Grants and designate each center funded under such

2 grants as a Morris K. Udall Center for Research on

3 Parkinson’s Disease.

4 ‘‘(2) REQUIREMENTS.—

5 ‘‘(A) IN GENERAL.—With respect to Par6 kinson’s, each center assisted under this sub7 section shall—

8 ‘‘(i) use the facilities of a single insti9 tution or a consortium of cooperating insti10 tutions, and meet such qualifications as

11 may be prescribed by the Director of the

12 NIH; and

13 ‘‘(ii) conduct basic and clinical re14 search and provide patient care services.

15 ‘‘(B) DISCRETIONARY REQUIREMENTS.—

16 With respect to Parkinson’s, each center as17 sisted under this subsection may—

18 ‘‘(i) conduct training programs for

19 scientists and health professionals;

20 ‘‘(ii) conduct programs to provide in21 formation and continuing education to

22 health professionals;

23 ‘‘(iii) conduct programs for the dis24 semination of information to the public;

25 and
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1 ‘‘(iv) develop and maintain, where ap2 propriate, a brain bank to collect speci3 mens related to the research and treatment

4 of Parkinson’s.

5 ‘‘(3) STIPENDS REGARDING TRAINING PRO6 GRAMS.—A center may use funds provided under

7 paragraph (1) to provide stipends for scientists and

8 health professionals enrolled in training programs

9 under paragraph (2)(C).

10 ‘‘(4) DURATION OF SUPPORT.—Support of a

11 center under this subsection may be for a period not

12 exceeding five years. Such period may be extended

13 by the Director of NIH for one or more additional

14 periods of not more than five years if the operations

15 of such center have been reviewed by an appropriate

16 technical and scientific peer review group established

17 by the Director and if such group has recommended

18 to the Director that such period should be extended.

19 ‘‘(d) DATA SYSTEM; INFORMATION CLEARING20 HOUSE.—

21 ‘‘(1) DATA SYSTEM.—The Director of NIH

22 shall establish the National Parkinson’s Disease

23 Data System for the collection, storage, analysis, re24 trieval, and dissemination of data derived from pa25 tient populations with such disease, including, where
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1 possible, data involving general populations for the

2 purpose of detection of individuals with a risk of de3 veloping the disease.

4 ‘‘(2) INFORMATION CLEARINGHOUSE.—The Di5 rector of NIH shall establish the National Parkin6 son’s Disease Information Clearinghouse to facilitate

7 and enhance knowledge and understanding of such

8 disease on the part of health professionals, patients,

9 and the public through the effective dissemination of

10 information.

11 ‘‘(e) MORRIS K. UDALL LEADERSHIP AND EXCEL12 LENCE AWARDS.—The Director of NIH shall establish a

13 grant program to support scientists who have distin14 guished themselves in the field of Parkinson’s research.

15 Grants under this subsection shall be utilized to enable

16 established investigators to devote greater time and re17 sources in laboratories to conduct research on Parkinson’s

18 and to encourage the development of a new generation of

19 investigators, with the support and guidance of the most

20 productive and innovative senior researchers.

21 ‘‘(f) NATIONAL PARKINSON’S DISEASE EDUCATION

22 PROGRAM.—The Director of NIH shall establish a na23 tional education program that is designed to foster a na24 tional focus on Parkinson’s and the care of those with Par25 kinson’s. Activities under such program shall include—
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1 ‘‘(1) the bringing together of public and private

2 organizations to develop better ways to provide care

3 to individuals with Parkinson’s, and assist the fami4 lies of such individuals; and

5 ‘‘(2) the provision of technical assistance to

6 public and private organizations that offer support

7 and aid to individuals with Parkinson’s and their

8 families.

9 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—

10 ‘‘(1) IN GENERAL.—For the purpose of carry11 ing out this section, there are authorized to be ap12 propriated $100,000,000 for fiscal year 1997, and

13 such sums as may be necessary for each of the fiscal

14 years 1998 through 2000.

15 ‘‘(2) AVAILABILITY.—Of the amount appro16 priated under paragraph (1), the Secretary shall

17 make available not to exceed $10,000,000 for fiscal

18 year 1997, and such sums as may be necessary for

19 each of the fiscal years 1998 through 2000, to es20 tablish Morris K. Udall Centers under subsection

21 (c).

22 ‘‘(3) LIMITATION ON USE OF FUNDS.—Notwith23 standing any other provision of law, none of the

24 amounts made available under this Act may be ex25 pended for any research on Parkinson’s that uses
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1 human fetal tissue, cells, or organs obtained from a

2 living or dead human embryo or fetus during or

3 after an induced abortion, or for any therapeutic ap4 plication for Parkinson’s that uses such human fetal

5 tissue, cells, or organs. This paragraph does not

6 apply to human fetal tissue, cells, or organs obtained

7 from a spontaneous abortion or an ectopic preg8 nancy.’’.

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