Legislation

* § 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 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 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