N.Y. Public Health Law § 2022: Establishment of registry

§ 2022. Establishment of registry. 1. The department shall establish

an ALS and MND registry for the collection of information on the

incidence and prevalence of ALS and MND. The department may consult with

ALS and MND experts, including neurologists, patients living with ALS

and MND, and ALS and MND 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 ALS and MND registry to the federal centers for disease

control and prevention, or successor agency, to local health officers,

or health researchers for the study of ALS and MND 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 ALS and MN Disease registry" which shall include information

on the incidence and prevalence of ALS and MND in the state by county,

and demographic information on affected patients.