THE BILL ITSELF
CS/HB 497
Neurofibromatosis Research Grants
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A bill to be entitled
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An act relating to the neurofibromatosis research
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grants; creating s. 381.994, F.S.; creating the
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Neurofibromatosis Disease Grant Program within the
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Department of Health; providing purpose of the
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program; requiring, subject to appropriation, the
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program to award certain grants; providing
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requirements for grant applications; requiring the
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Rare Disease Advisory Council and the peer review
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panels to establish and follow specified guidelines;
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prohibiting members of the council and panels from
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participating in certain discussions and decisions
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under certain circumstances; authorizing certain
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appropriation funds to be carried forward under
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certain circumstances; providing an effective date.
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Be It Enacted by the Legislature of the State of Florida:
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Section 1. Section 381.994, Florida Statutes, is created
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to read:
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381.994 Neurofibromatosis Disease Grant Program—
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(1)(a) There is created within the Department of Health
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the Neurofibromatosis Disease Grant Program. The purpose of the
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program is to advance the progress of research and cures for
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neurofibromatosis by awarding grants through a competitive,
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peer-reviewed process.
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(b) Subject to legislative appropriation, the program
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shall award grants for scientific and clinical research to
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further the search for new diagnostics, treatments, and cures
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for neurofibromatosis.
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(2)(a) Applications for grants for neurofibromatosis
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disease research may be submitted by any university or
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established research institute in the state. All qualified
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investigators in the state, regardless of institutional
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affiliation, shall have equal access and opportunity to compete
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for the research funding. Preference may be given to grant
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proposals that foster collaboration among institutions,
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researchers, and community practitioners, as such proposals
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support the advancement of treatments and cures of
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neurofibromatosis through basic or applied research. Grants
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shall be awarded by the department, after consultation with the
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Rare Disease Advisory Council, pursuant to s. 381.99, on the
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basis of scientific merit, as determined by the competitive,
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peer-reviewed process to ensure objectivity, consistency, and
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high quality. The following types of applications may be
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considered for funding:
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1. Investigator-initiated research grants.
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2. Institutional research grants.
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3. Collaborative research grants, including those that
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advance the finding of treatment and cures through basic or
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applied research.
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(b) To ensure appropriate and fair evaluation of grant
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applications based on scientific merit, the department shall
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appoint peer review panels of independent, scientifically
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qualified individuals to review the scientific merit of each
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proposal and establish its priority score. The priority scores
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shall be forwarded to the council and must be considered in
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determining which proposals shall be recommended for funding.
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(3) The Rare Disease Advisory Council and the peer review
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panels shall establish and follow rigorous guidelines for
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ethical conduct and adhere to a strict policy with regard to
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conflicts of interest. A member of the council or panel may not
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participate in any discussion or decision of the council or
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panel with respect to a research proposal by any firm, entity,
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or agency that the member is associated with as a member of the
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governing body or as an employee or with which the member has
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entered into a contractual arrangement.
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(4) Notwithstanding s. 216.301 and pursuant to s. 216.351,
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the balance of any appropriation from the General Revenue Fund
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for the Neurofibromatosis Disease Grant Program that is not
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disbursed but that is obligated pursuant to contract or
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committed to be expended by June 30 of the fiscal year in which
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the funds are appropriated may be carried forward for up to 5
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years after the effective date of the original appropriation.
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Section 2. This act shall take effect July 1, 2026.