N.Y.
Public Health Law Section 2023
Duties of the department
1.
ALS and MND reports and data shall be maintained by the department in a manner suitable for research purposes and shall be made available to people as set forth in § 2022 (Establishment of registry)section two thousand twenty-two of this article.2.
All information collection under this article shall be confidential insofar as the identity of individual patients is concerned and shall be used solely for the purposes as provided in this article. Access to such information shall be limited to authorized employees of the department as well as persons and organizations identified in § 2022 (Establishment of registry)section two thousand twenty-two of this article with valid scientific interest and qualifications, as determined by the commissioner, who are engaged in demographic, epidemiological, or other similar studies related to public health.3.
The department shall maintain an accurate record of all people who are given access to the information contained in the ALS and MND registry. Such a record shall include the name of the person authorizing access, the name, title and organizational affiliation of persons given access, dates of access, and the specific purposes for which information is to be used.4.
Any person who, in violation of a written agreement to maintain confidentiality, discloses any information provided under this article, or who uses information provided under this article in a manner other than that prescribed by the commissioner, may be denied further access to any confidential information maintained by the department. * NB Effective January 14, 2026
Source:
Section 2023 — Duties of the department, https://www.nysenate.gov/legislation/laws/PBH/2023 (updated Oct. 24, 2025; accessed Oct. 25, 2025).
