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NY A01985
Bill
Status
1/14/2025
Primary Sponsor
Amy Paulin
Click for details
AI Summary
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Establishes a state frontotemporal degeneration (FTD) registry to collect information on the incidence and prevalence of FTD disorders, including behavioral variant FTD, primary progressive aphasia, corticobasal syndrome, and progressive supranuclear palsy
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Requires physicians, nurse practitioners, physician assistants, and general hospitals to report FTD cases to the Department of Health within 180 days of diagnosis or treatment
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Patients must receive written and verbal notice about data collection and may opt out in writing, though basic incidence data will still be recorded for those who decline participation
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All patient information in the registry must remain confidential and can only be shared in de-identified, aggregate form with entities like the CDC or qualified health researchers for public health purposes
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Requires the department to create and maintain a public website called the "New York State Frontotemporal Degeneration Registry" by January 1, 2028, displaying incidence, prevalence, and demographic data by county
Legislative Description
Establishes a state frontotemporal degeneration registry; defines terms; requires every physician, nurse practitioner, nurse physician assistant and general hospital that diagnoses or is treating a patient diagnosed with an FTD disorder to give notice to the department; requires certain information to be confidential; sets forth the duties of the commissioner of health; requires the department of health to create and maintain a webpage.
Last Action
substituted by s598b
6/6/2025