N.Y.
Public Health Law Section 2017
Establishment of registry
1.
The department shall establish a frontotemporal degeneration registry for the collection of information on the rate of clinical diagnoses of FTD disorders. The department shall consult with FTD disorders experts, including neurologists, patients living with FTD disorders, and FTD disorders researchers to assist in the development and implementation of such registry, and to determine what data shall be collected.2.
All information maintained by the department under the provisions of this section shall be confidential except as necessary to carry out the provisions of this section and shall not be released for any other purpose.3.
The department may enter into an agreement to provide data collected in the frontotemporal degeneration registry to the federal Centers for Disease Control and Prevention, or successor agency, to local health officers, or health researchers for the study of FTD disorders for public health and research purposes. Data shall be provided in summary, statistical, aggregate, or other form such that no individual person can be identified.4.
On or before January first, two thousand twenty-seven, the department shall create and maintain a public website called the “New York state frontotemporal degeneration registry” which shall include information on the rate of clinical diagnoses of FTD disorders in the state by county, and demographic information on affected patients. * NB Effective January 14, 2026
Source:
Section 2017 — Establishment of registry, https://www.nysenate.gov/legislation/laws/PBH/2017 (updated Oct. 24, 2025; accessed Oct. 25, 2025).
