An Act establishing the Neurodegenerative Disease Research Program and the Neurodegenerative Disease Research Program Fund; and imposing duties on the Department of Health.

PRIOR PRINTER'S NO. 1437 PRINTER'S NO. 1713
THE GENERAL ASSEMBLY OF PENNSYLVANIA
HOUSE BILL
No. 704
Session of
2025
INTRODUCED BY MULLINS, CUTLER, SCHLOSSBERG, NEILSON, McNEILL,
KHAN, FLICK, JAMES, GIRAL, SANCHEZ, PIELLI, HANBIDGE, HILL-
EVANS, CIRESI, MENTZER, HOWARD, DONAHUE, BRENNAN, McANDREW,
FREEMAN, PICKETT, DELLOSO, TWARDZIK, O'MARA, FLEMING, DEASY,
CERRATO, GREEN, GILLEN, POWELL, WAXMAN, PROKOPIAK, T. DAVIS,
PASHINSKI, WEBSTER, STEELE, CEPEDA-FREYTIZ, MAYES, MALAGARI,
SHUSTERMAN, BOROWSKI, OLSOMMER, INGLIS, KENYATTA, BURGOS,
GAYDOS, SCHMITT, STAATS, MERSKI, DOUGHERTY, WARREN, SOLOMON
AND BRIGGS, APRIL 22, 2025
AS REPORTED FROM COMMITTEE ON HEALTH, HOUSE OF REPRESENTATIVES,
AS AMENDED, MAY 14, 2025
AN ACT
Establishing the Neurodegenerative Disease Research Program and
the Neurodegenerative Disease Research Program Fund; and
imposing duties on the Department of Health.
The General Assembly of the Commonwealth of Pennsylvania
hereby enacts as follows:
Section 1. Short title.
This act shall be known and may be cited as the
Neurodegenerative Disease Research Program Act.
Section 2. Definitions.
The following words and phrases when used in this act shall
have the meanings given to them in this section unless the
context clearly indicates otherwise:
"Biorepository." An entity that receives, stores, processes
or disseminates biospecimens, the derivatives of biospecimens or
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relevant data regarding biospecimens.
"Department." The Department of Health of the Commonwealth.
"Eligible applicant." An institution engaged in
neurodegenerative disease research.
"Fund." The Neurodegenerative Disease Research Program Fund
established under section 5(a).
"Institution." Any of the following located in this
Commonwealth:
(1) An academic clinical research entity that conducts
neurodegenerative disease research.
(2) An institution of higher education that conducts
neurodegenerative disease research.
"INSTITUTION." AN ACADEMIC CLINICAL MEDICAL CENTER LOCATED
IN THIS COMMONWEALTH THAT CONDUCTS NEURODEGENERATIVE DISEASE
RESEARCH.
"Neurodegenerative disease." Conditions characterized by the
progressive loss of nerve cells in the brain or spinal cord,
leading to functional decline and often resulting in
debilitating conditions such as dementia or movement disorders,
including, but not limited to, amyotrophic lateral sclerosis,
Alzheimer's disease, Huntington's disease or Parkinson's
disease.
"Neurodegenerative disease research." Health research on
neurodegenerative diseases. The term includes:
(1) Biomedical research.
(2) Clinical research.
(3) Health services research.
(4) Research regarding the establishment of a Statewide
biorepository.
(5) Research regarding a Statewide tissue bank.
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"Program." The Neurodegenerative Disease Research Program
established under section 3(a).
"Tissue bank." An entity that is licensed, accredited or
regulated under Federal or State law to engage in the recovery,
screening, testing, processing, storage or distribution of
tissue.
Section 3. Neurodegenerative Disease Research Program.
(a) Establishment.--The Neurodegenerative Disease Research
Program is established within the department.
(b) Purpose.--The program shall provide grants to eligible
applicants to fund neurodegenerative disease research projects
on neurodegenerative disease and related infrastructure.
(c) Administration.--The department shall implement and
administer the program in accordance with this act.
(d) Application form.--
(1) The department shall develop an application form
which must be completed and approved before an eligible
applicant can receive a grant under the program.
(2) The application form under this subsection must
include:
(i) Eligibility criteria to receive a grant under
the program.
(ii) Deadlines for submittal of a completed
application form.
(iii) Information to be submitted with a completed
application, including:
(A) Contact information.
(B) Proof of eligibility for a grant under the
program.
(C) The purpose and amount of the requested
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grant under the program.
(iv) Certification that the proposed research has
undergone appropriate Institutional Review Board review,
INSTITUTIONAL ANIMAL CARE AND USE COMMITTEE REVIEW and
peer review as necessary.
(3) The department shall post the application form under
this subsection on its publicly accessible Internet website.
(e) Determination.--The department shall develop a process
for:
(1) The submittal and review of a completed application
form for grants under the program, including a timeline for
making a determination on the application and notice of the
award of grants under the program.
(2) The disbursement of grants under the program to
eligible applicants, including any limit on the amount of a
grant disbursed to an eligible applicant.
(3) The general administration of the program, including
the maintenance of records regarding the program.
(f) Reports.--Within 90 days after the grant period ends,
each recipient shall submit a report to the department which
shall include:
(1) The progress made in achieving expected research
goals and objectives.
(2) Any major discoveries, new drugs and new approaches
for prevention, diagnosis and treatment which are
attributable to the completed research project.
(3) Any other information deemed necessary by the
department.
Section 4. Funding formula.
(a) Eligibility.--If an institution has received funding for
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neurodegenerative disease research from the National Institutes
of Health OR THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE
during any of the four preceding Federal fiscal years in which
money for that research was disbursed, the institution shall be
eligible to receive a grant under the program.
(b) Fund distribution.--Money to be distributed to each
eligible applicant shall be calculated by dividing the total
number of eligible applicants by the total amount appropriated
in a fiscal year.
(C) FUNDING LIMITATIONS.--INDIRECT COSTS SHALL BE CAPPED AT
10% OF GRANT FUNDS.
Section 5. Neurodegenerative Disease Research Program Fund.
(a) Establishment.--The Neurodegenerative Disease Research
Program Fund is established in the State Treasury to carry out
the purposes of the program.
(b) Operation.--All money deposited into the fund and
interest and other earnings on the money in the fund are
appropriated to the department on a continuing basis to award
grants under the program.
(c) Fund sources.--The department may solicit and accept
funding for the program, including money appropriated by the
General Assembly, Federal money, grants, donations, gifts and
other payments from any source, which shall be deposited into
the fund.
Section 6. Accountability.
An eligible institution that receives a grant under the
program shall be subject to a performance review by the
department upon completion of a neurodegenerative disease
research project or more often as deemed necessary by the
department. The performance review shall be based on an
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evaluation process by the department.
Section 7. Reports.
(a) Annual reports required.--No later than September 1,
2025, DECEMBER 31 OF THE YEAR AFTER THE EFFECTIVE DATE OF THIS
SECTION and each September 1 DECEMBER 31 thereafter, the
department shall issue an annual report detailing the operation
of the program and fund during the preceding year.
(b) Contents.--Each annual report under this section must
include the following:
(1) The number of eligible applicants that sought a
grant under the program.
(2) The amount of the grant that each eligible applicant
received under the program.
(3) The number of applicants that were denied, in whole
or in part, a grant under the program, including the reasons
for the full or partial denial.
(4) The money remaining in the fund.
(5) Any other information deemed necessary by the
department.
(c) Transmittal.--Each annual report under this section
shall be transmitted to the following:
(1) The Governor.
(2) The President pro tempore of the Senate.
(3) The Speaker of the House of Representatives.
(4) The Minority Leader of the Senate.
(5) The Minority Leader of the House of Representatives.
(6) The chairperson and minority chairperson of the
Appropriations Committee of the Senate.
(7) The chairperson and minority chairperson of the
Appropriations Committee of the House of Representatives.
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(8) THE CHAIRPERSON AND MINORITY CHAIRPERSON OF THE
HEALTH AND HUMAN SERVICES COMMITTEE OF THE SENATE.
(9) THE CHAIRPERSON AND MINORITY CHAIRPERSON OF THE
HEALTH COMMITTEE OF THE HOUSE OF REPRESENTATIVES.
(d) Posting.--The department shall post each annual report
under this section on the publicly accessible Internet website
of the department.
Section 8. Rules and regulations.
The department shall adopt or promulgate rules or regulations
necessary to implement and administer this act.
Section 9. Effective date.
This act shall take effect immediately.
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