Bill > A01985

This bill establishes a state registry for frontotemporal degeneration (FTD), a group of progressive brain disorders that affect behavior, personality, language, and motor control. The bill requires physicians, nurse practitioners, physician assistants, and hospitals to report all FTD diagnoses to the state Department of Health within 180 days, while ensuring patient confidentiality. Patients must be informed about data collection and can opt-out, though the basic incidence of their diagnosis will still be recorded. The Department of Health will create and maintain the registry in consultation with FTD experts, patients, and researchers, with the goal of collecting data on clinical diagnoses. The registry's information will be confidential but can be shared in aggregate form with federal agencies like the CDC, local health officers, and health researchers for public health and research purposes. By January 2027, the department must create a public website displaying FTD diagnosis rates by county and demographic information. The bill includes strict protocols for maintaining data confidentiality, limiting access to authorized personnel, and protecting individual patient identities. Healthcare providers who improperly disclose confidential information may be denied future access to the registry's data.

Budget and Finance, Health and Social Services, Housing and Urban Affairs

https://www.nysenate.gov/legislation/bills/2025/A1985