Establishes a state frontotemporal degeneration registry

New York tracks frontotemporal degeneration cases

The law creates a New York Health Department registry for frontotemporal degeneration (FTD), a group of progressive brain disorders. It takes effect 90 days after becoming law. Doctors, nurse practitioners, physician assistants, and general hospitals diagnosing or treating FTD must report cases within 180 days of onset. Patients must get written and spoken notice, with a chance to review participation and opt out in writing. Even after opting out, the registry still receives a count showing that the FTD case occurred. The department must consult experts, affected people, and researchers and keep data suitable for research. By January 1, 2027, it must maintain a public website showing diagnosis rates by county and patient demographic information. Registry records remain confidential; access is limited to authorized department staff and qualified researchers with valid scientific interests. Data shared with federal disease-control agencies, local health officers, or health researchers must not identify anyone. The department must log who approves and receives access, when, and why; people who break confidentiality rules may lose access. The commissioner can set rules for reporting, permitted uses, and privacy safeguards.