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NY A09938
Bill
Status
4/26/2024
Primary Sponsor
Amy Paulin
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AI Summary
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Establishes a mandatory frontotemporal degeneration (FTD) registry under the Department of Health in conjunction with the State Office for the Aging to collect incidence and epidemiological data on FTD and related dementias.
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Creates a FTD Registry Advisory Committee with 11 member categories (including neurologists, patients, caregivers, researchers, and advocacy organization representatives) selected by the Governor, Legislature, and Commissioner to guide registry development and implementation.
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Requires hospitals, physicians, and healthcare providers to report all diagnosed FTD cases to the Department of Health, with patients allowed to affirmatively opt-out in writing and only having their diagnosis reported if they decline further participation.
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Mandates annual reports to the Legislature and Governor beginning January 1, 2025, detailing FTD incidence and prevalence by county, demographics, new diagnoses, treatment advancements, available resources, average care costs, and misdiagnosis rates.
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Protects patient confidentiality through coding systems and restricts registry data from subpoena and court proceedings, while permitting data sharing with approved researchers and other states' registries with proper safeguards and institutional review board approval.
Legislative Description
Establishes a state frontotemporal degeneration registry; designates frontotemporal degeneration and related dementias as diseases required to be reported in the state; establishes a frontotemporal degeneration registry advisory committee to assist in the development and implementation of the registry; allows a patient to opt out of participation in the registry; requires annual reports to the legislature and governor on the incidents and prevalence of frontotemporal degeneration in the state by county; requires the department of health to create and maintain a webpage.
Last Action
referred to health
4/26/2024