Establishes a state frontotemporal degeneration registry; defines terms; requires every physician, nurse practitioner, nurse physician assistant and general hospital that diagnoses or is treating a patient diagnosed with an FTD disorder to give notice to the department; requires certain information to be confidential; sets forth the duties of the commissioner of health; requires the department of health to create and maintain a webpage.
STATE OF NEW YORK
________________________________________________________________________
1985--C
2025-2026 Regular Sessions
IN ASSEMBLY
January 14, 2025
___________
Introduced by M. of A. PAULIN, DE LOS SANTOS, BEEPHAN, BORES, EPSTEIN,
SAYEGH -- read once and referred to the Committee on Health -- commit-
tee discharged, bill amended, ordered reprinted as amended and recom-
mitted to said committee -- again reported from said committee with
amendments, ordered reprinted as amended and recommitted to said
committee -- reported and referred to the Committee on Codes --
committee discharged, bill amended, ordered reprinted as amended and
recommitted to said committee
AN ACT to amend the public health law, in relation to establishing a
state frontotemporal degeneration registry
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. The public health law is amended by adding a new article
2 20-C to read as follows:
3 ARTICLE 20-C
4 STATE FRONTOTEMPORAL DEGENERATION
5 REGISTRY
6 Section 2015. Definitions.
7 2016. Duty to report.
8 2017. Establishment of registry.
9 2018. Duties of the department.
10 2019. Duties of the commissioner.
11 § 2015. Definitions. As used in this article, the following terms
12 shall have the following meanings:
13 1. "Frontotemporal degeneration disorders" or "FTD disorders" means a
14 group of clinical disorders caused by progressive nerve cell loss in the
15 brain's frontal lobes and/or temporal lobes which can lead to loss of
16 function in these brain regions, which variably cause deterioration in
17 behavior, personality and/or difficulty with producing or comprehending
18 language, as well as loss of motor control and movement. For the
19 purposes of this title frontotemporal degeneration disorders is the same
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD02004-06-5
A. 1985--C 2
1 as "FTD" and includes, but is not limited to behavioral variant FTD,
2 primary progressive aphasia, corticobasal syndrome, and progressive
3 supranuclear palsy. Some individuals with FTD may also be diagnosed with
4 ALS.
5 2. "Dementia" means a usually progressive condition marked by the
6 development of multiple cognitive deficits, which may include but is not
7 exclusive to memory impairment, aphasia, and the inability to plan and
8 initiate complex behavior. Dementia has numerous different causes
9 including but not limited to FTD, Alzheimer's disease, Lewy Body Demen-
10 tia and Vascular Dementia.
11 § 2016. Duty to report. 1. Every physician, nurse practitioner, physi-
12 cian assistant and general hospital that diagnoses or is treating a
13 patient diagnosed with FTD disorder shall give notice no later than one
14 hundred eighty days of every case of FTD disorders coming under their
15 care, to the department, in a format to be determined by the commission-
16 er, except as otherwise provided in this article.
17 2. All patients diagnosed with FTD disorders shall be provided written
18 and verbal notice regarding the collection of information and patient
19 data on FTD disorders. Patients who do not wish to participate in the
20 collection of data shall affirmatively opt-out in writing after ample
21 opportunity to review such notice, provided that, the mere incidence of
22 a patient with an FTD disorder shall be the sole required information
23 for the registry under section two thousand seventeen of this article
24 for any patient who chooses not to participate.
25 § 2017. Establishment of registry. 1. The department shall establish a
26 frontotemporal degeneration registry for the collection of information
27 on the rate of clinical diagnoses of FTD disorders. The department shall
28 consult with FTD disorders experts, including neurologists, patients
29 living with FTD disorders, and FTD disorders researchers to assist in
30 the development and implementation of such registry, and to determine
31 what data shall be collected.
32 2. All information maintained by the department under the provisions
33 of this section shall be confidential except as necessary to carry out
34 the provisions of this section and shall not be released for any other
35 purpose.
36 3. The department may enter into an agreement to provide data
37 collected in the frontotemporal degeneration registry to the federal
38 Centers for Disease Control and Prevention, or successor agency, to
39 local health officers, or health researchers for the study of FTD disor-
40 ders for public health and research purposes. Data shall be provided in
41 summary, statistical, aggregate, or other form such that no individual
42 person can be identified.
43 4. On or before January first, two thousand twenty-seven, the depart-
44 ment shall create and maintain a public website called the "New York
45 state frontotemporal degeneration registry" which shall include informa-
46 tion on the rate of clinical diagnoses of FTD disorders in the state by
47 county, and demographic information on affected patients.
48 § 2018. Duties of the department. 1. FTD disorders reports and data
49 shall be maintained by the department in a manner suitable for research
50 purposes, and shall be made available to persons as set forth in section
51 two thousand seventeen of this article.
52 2. All information collected under this article shall be confidential
53 insofar as the identity of individual patients is concerned and shall be
54 solely for the purposes as provided in this article. Access to such
55 information shall be limited to authorized employees of the department
56 as well as persons and organizations specified in section two thousand
A. 1985--C 3
1 seventeen of this article with valid scientific interest and qualifica-
2 tions, as determined by the commissioner, who are engaged in demograph-
3 ic, epidemiological, or other similar studies related to public health.
4 3. The department shall maintain an accurate record of all persons who
5 are given access to the information contained in the frontotemporal
6 degeneration registry. Such record shall include the name of the person
7 authorizing access, the name, title and organizational affiliation of
8 persons given access, dates of access, and the specific purposes for
9 which information is to be used.
10 4. Any person who, in violation of a written agreement to maintain
11 confidentiality, discloses any information provided under this section,
12 or who uses information provided under this section in a manner other
13 than that prescribed by the commissioner, may be denied further access
14 to any confidential information maintained by the department.
15 § 2019. Duties of the commissioner. The commissioner may promulgate
16 any regulations necessary to implement the provisions of this article,
17 including but not limited to:
18 1. establishing the form, content, and manner by which providers shall
19 report FTD disorders information into the registry established under
20 section two thousand seventeen of this article;
21 2. prescribing the permissible uses for the information made available
22 under this article; and
23 3. establishing procedures to maintain the confidentiality of informa-
24 tion collected by providers and provided to members of the department
25 pursuant to this article. This shall include a procedure to ensure that
26 confidential patient information is deidentified prior to being provided
27 to authorized participants under this article.
28 § 2. This act shall take effect on the ninetieth day after it shall
29 have become a law.
