Bill > S00598

This bill establishes a state registry for frontotemporal degeneration (FTD), a group of brain disorders causing progressive nerve cell loss in the frontal and temporal lobes. The bill requires physicians, nurse practitioners, physician assistants, and hospitals to report all diagnosed FTD cases to the state health department within 180 days, while ensuring patient confidentiality. Patients will be informed about data collection and can opt out, though the basic incidence of their diagnosis will still be recorded. The department will create a registry consulting with FTD experts and researchers, develop a public website by January 2027 displaying FTD diagnosis rates by county and patient demographics, and maintain confidential records. The registry can share anonymized data with federal agencies like the CDC, local health officers, and health researchers for public health and research purposes. The bill also defines key terms like FTD disorders (which include behavioral variant FTD, progressive aphasia, and other related conditions) and dementia, and outlines strict protocols for data access, requiring detailed records of who accesses the information and for what purposes. The commissioner of health is authorized to create regulations implementing these provisions, with a focus on maintaining patient privacy and establishing clear reporting procedures.

Budget and Finance, Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/S598