Legislation

* § 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.

* NB Effective January 14, 2026