N.Y. Public Health Law § 2017: Establishment of registry

§ 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.