§ 2022 — Establishment of registry

§ 2022. Establishment of registry. 1. The department shall establish\nan ALS and MND registry for the collection of information on the\nincidence and prevalence of ALS and MND. The department may consult with\nALS and MND experts, including neurologists, patients living with ALS\nand MND, and ALS and MND researchers to assist in the development and\nimplementation of such registry, and to determine what data shall be\ncollected.\n 2. All information maintained by the department under the provisions\nof this section shall be confidential except as necessary to carry out\nthe provisions of this section and shall not be released for any other\npurpose.\n 3. The department may enter into an agreement to provide data\ncollected in the ALS and MND registry to the federal centers for disease\ncontrol and prevention, or successor agency, to local health officers,\nor health researchers for the study of ALS and MND for public health and\nresearch purposes. Data shall be provided in summary, statistical,\naggregate, or other form such that no individual person can be\nidentified.\n 4. On or before January first, two thousand twenty-seven, the\ndepartment shall create and maintain a public website called the "New\nYork state ALS and MN Disease registry" which shall include information\non the incidence and prevalence of ALS and MND in the state by county,\nand demographic information on affected patients.\n