HB 704 — An Act establishing the Neurodegenerative Disease Research Program and the Neurodegenerative Disease Research Program Fund; and imposing duties on the Department of Health.

PRINTER'S NO.   1437

                   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 AND WARREN,
        APRIL 22, 2025

     REFERRED TO COMMITTEE ON HEALTH, APRIL 22, 2025


                                   AN ACT
 1   Establishing the Neurodegenerative Disease Research Program and
 2      the Neurodegenerative Disease Research Program Fund; and
 3      imposing duties on the Department of Health.
 4      The General Assembly of the Commonwealth of Pennsylvania
 5   hereby enacts as follows:
 6   Section 1.   Short title.
 7      This act shall be known and may be cited as the
 8   Neurodegenerative Disease Research Program Act.
 9   Section 2.   Definitions.
10      The following words and phrases when used in this act shall
11   have the meanings given to them in this section unless the
12   context clearly indicates otherwise:
13      "Biorepository."   An entity that receives, stores, processes
14   or disseminates biospecimens, the derivatives of biospecimens or
15   relevant data regarding biospecimens.
 1      "Department."    The Department of Health of the Commonwealth.
 2      "Eligible applicant."    An institution engaged in
 3   neurodegenerative disease research.
 4      "Fund."   The Neurodegenerative Disease Research Program Fund
 5   established under section 5(a).
 6      "Institution."   Any of the following located in this
 7   Commonwealth:
 8          (1)   An academic clinical research entity that conducts
 9      neurodegenerative disease research.
10          (2)   An institution of higher education that conducts
11      neurodegenerative disease research.
12      "Neurodegenerative disease."     Conditions characterized by the
13   progressive loss of nerve cells in the brain or spinal cord,
14   leading to functional decline and often resulting in
15   debilitating conditions such as dementia or movement disorders,
16   including, but not limited to, amyotrophic lateral sclerosis,
17   Alzheimer's disease, Huntington's disease or Parkinson's
18   disease.
19      "Neurodegenerative disease research."    Health research on
20   neurodegenerative diseases. The term includes:
21          (1)   Biomedical research.
22          (2)   Clinical research.
23          (3)   Health services research.
24          (4)   Research regarding the establishment of a Statewide
25      biorepository.
26          (5)   Research regarding a Statewide tissue bank.
27      "Program."   The Neurodegenerative Disease Research Program
28   established under section 3(a).
29      "Tissue bank."   An entity that is licensed, accredited or
30   regulated under Federal or State law to engage in the recovery,

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 1   screening, testing, processing, storage or distribution of
 2   tissue.
 3   Section 3.      Neurodegenerative Disease Research Program.
 4      (a)    Establishment.--The Neurodegenerative Disease Research
 5   Program is established within the department.
 6      (b)    Purpose.--The program shall provide grants to eligible
 7   applicants to fund neurodegenerative disease research projects
 8   on neurodegenerative disease and related infrastructure.
 9      (c)    Administration.--The department shall implement and
10   administer the program in accordance with this act.
11      (d)    Application form.--
12             (1)   The department shall develop an application form
13      which must be completed and approved before an eligible
14      applicant can receive a grant under the program.
15             (2)   The application form under this subsection must
16      include:
17                   (i)    Eligibility criteria to receive a grant under
18             the program.
19                   (ii)    Deadlines for submittal of a completed
20             application form.
21                   (iii)    Information to be submitted with a completed
22             application, including:
23                          (A)   Contact information.
24                          (B)   Proof of eligibility for a grant under the
25                   program.
26                          (C)   The purpose and amount of the requested
27                   grant under the program.
28                   (iv)    Certification that the proposed research has
29             undergone appropriate Institutional Review Board review
30             and peer review as necessary.

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 1            (3)   The department shall post the application form under
 2      this subsection on its publicly accessible Internet website.
 3      (e)   Determination.--The department shall develop a process
 4   for:
 5            (1)   The submittal and review of a completed application
 6      form for grants under the program, including a timeline for
 7      making a determination on the application and notice of the
 8      award of grants under the program.
 9            (2)   The disbursement of grants under the program to
10      eligible applicants, including any limit on the amount of a
11      grant disbursed to an eligible applicant.
12            (3)   The general administration of the program, including
13      the maintenance of records regarding the program.
14      (f)   Reports.--Within 90 days after the grant period ends,
15   each recipient shall submit a report to the department which
16   shall include:
17            (1)   The progress made in achieving expected research
18      goals and objectives.
19            (2)   Any major discoveries, new drugs and new approaches
20      for prevention, diagnosis and treatment which are
21      attributable to the completed research project.
22            (3)   Any other information deemed necessary by the
23      department.
24   Section 4.     Funding formula.
25      (a)   Eligibility.--If an institution has received funding for
26   neurodegenerative disease research from the National Institutes
27   of Health during any of the four preceding Federal fiscal years
28   in which money for that research was disbursed, the institution
29   shall be eligible to receive a grant under the program.
30      (b)   Fund distribution.--Money to be distributed to each

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 1   eligible applicant shall be calculated by dividing the total
 2   number of eligible applicants by the total amount appropriated
 3   in a fiscal year.
 4   Section 5.   Neurodegenerative Disease Research Program Fund.
 5      (a)   Establishment.--The Neurodegenerative Disease Research
 6   Program Fund is established in the State Treasury to carry out
 7   the purposes of the program.
 8      (b)   Operation.--All money deposited into the fund and
 9   interest and other earnings on the money in the fund are
10   appropriated to the department on a continuing basis to award
11   grants under the program.
12      (c)   Fund sources.--The department may solicit and accept
13   funding for the program, including money appropriated by the
14   General Assembly, Federal money, grants, donations, gifts and
15   other payments from any source, which shall be deposited into
16   the fund.
17   Section 6.   Accountability.
18      An eligible institution that receives a grant under the
19   program shall be subject to a performance review by the
20   department upon completion of a neurodegenerative disease
21   research project or more often as deemed necessary by the
22   department. The performance review shall be based on an
23   evaluation process by the department.
24   Section 7.   Reports.
25      (a)   Annual reports required.--No later than September 1,
26   2025, and each September 1 thereafter, the department shall
27   issue an annual report detailing the operation of the program
28   and fund during the preceding year.
29      (b)   Contents.--Each annual report under this section must
30   include the following:

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 1            (1)   The number of eligible applicants that sought a
 2      grant under the program.
 3            (2)   The amount of the grant that each eligible applicant
 4      received under the program.
 5            (3)   The number of applicants that were denied, in whole
 6      or in part, a grant under the program, including the reasons
 7      for the full or partial denial.
 8            (4)   The money remaining in the fund.
 9            (5)   Any other information deemed necessary by the
10      department.
11      (c)   Transmittal.--Each annual report under this section
12   shall be transmitted to the following:
13            (1)   The Governor.
14            (2)   The President pro tempore of the Senate.
15            (3)   The Speaker of the House of Representatives.
16            (4)   The Minority Leader of the Senate.
17            (5)   The Minority Leader of the House of Representatives.
18            (6)   The chairperson and minority chairperson of the
19      Appropriations Committee of the Senate.
20            (7)   The chairperson and minority chairperson of the
21      Appropriations Committee of the House of Representatives.
22      (d)   Posting.--The department shall post each annual report
23   under this section on the publicly accessible Internet website
24   of the department.
25   Section 8.     Rules and regulations.
26      The department shall adopt or promulgate rules or regulations
27   necessary to implement and administer this act.
28   Section 9.     Effective date.
29      This act shall take effect immediately.



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