Shown verbatim: the complete text as captured from the official source posted by the New York State Senate, fetched 2026-08-11. Nothing is edited or removed. Where this bill amends existing law, language marked for deletion in the official source appears here in brackets. The official bill page.
S T A T E O F N E W Y O R K
________________________________________________________________________
598--B
2025-2026 Regular Sessions
I N S E N A T E
(PREFILED)
January 8, 2025
___________
Introduced by Sens. HINCHEY, COONEY, FAHY, GIANARIS, GONZALEZ, JACKSON
-- read twice and ordered printed, and when printed to be committed to
the Committee on Health -- reported favorably from said committee and
committed to the Committee on Finance -- committee discharged, bill
amended, ordered reprinted as amended and recommitted to said commit-
tee -- 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:
Section 1. The public health law is amended by adding a new article
20-C to read as follows:
ARTICLE 20-C
STATE FRONTOTEMPORAL DEGENERATION
REGISTRY
SECTION 2015. DEFINITIONS.
2016. DUTY TO REPORT.
2017. ESTABLISHMENT OF REGISTRY.
2018. DUTIES OF THE DEPARTMENT.
2019. DUTIES OF THE COMMISSIONER.
§ 2015. DEFINITIONS. AS USED IN THIS ARTICLE, THE FOLLOWING TERMS
SHALL HAVE THE FOLLOWING MEANINGS:
1. "FRONTOTEMPORAL DEGENERATION DISORDERS" OR "FTD DISORDERS" MEANS A
GROUP OF CLINICAL DISORDERS CAUSED BY PROGRESSIVE NERVE CELL LOSS IN THE
BRAIN'S FRONTAL LOBES AND/OR TEMPORAL LOBES WHICH CAN LEAD TO LOSS OF
FUNCTION IN THESE BRAIN REGIONS, WHICH VARIABLY CAUSE DETERIORATION IN
BEHAVIOR, PERSONALITY AND/OR DIFFICULTY WITH PRODUCING OR COMPREHENDING
LANGUAGE, AS WELL AS LOSS OF MOTOR CONTROL AND MOVEMENT. FOR THE
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.
LBD02004-07-5
S. 598--B 2
AS "FTD" AND INCLUDES, BUT IS NOT LIMITED TO BEHAVIORAL VARIANT FTD,
PRIMARY PROGRESSIVE APHASIA, CORTICOBASAL SYNDROME, AND PROGRESSIVE
SUPRANUCLEAR PALSY. SOME INDIVIDUALS WITH FTD MAY ALSO BE DIAGNOSED WITH
ALS.
2. "DEMENTIA" MEANS A USUALLY PROGRESSIVE CONDITION MARKED BY THE
DEVELOPMENT OF MULTIPLE COGNITIVE DEFICITS, WHICH MAY INCLUDE BUT IS NOT
EXCLUSIVE TO MEMORY IMPAIRMENT, APHASIA, AND THE INABILITY TO PLAN AND
INITIATE COMPLEX BEHAVIOR. DEMENTIA HAS NUMEROUS DIFFERENT CAUSES
INCLUDING BUT NOT LIMITED TO FTD, ALZHEIMER'S DISEASE, LEWY BODY DEMEN-
TIA AND VASCULAR DEMENTIA.
§ 2016. DUTY TO REPORT. 1. EVERY PHYSICIAN, NURSE PRACTITIONER, PHYSI-
CIAN ASSISTANT AND GENERAL HOSPITAL THAT DIAGNOSES OR IS TREATING A
PATIENT DIAGNOSED WITH FTD DISORDER SHALL GIVE NOTICE NO LATER THAN ONE
HUNDRED EIGHTY DAYS OF EVERY CASE OF FTD DISORDERS COMING UNDER THEIR
CARE, TO THE DEPARTMENT, IN A FORMAT TO BE DETERMINED BY THE COMMISSION-
ER, EXCEPT AS OTHERWISE PROVIDED IN THIS ARTICLE.
2. ALL PATIENTS DIAGNOSED WITH FTD DISORDERS SHALL BE PROVIDED WRITTEN
AND VERBAL NOTICE REGARDING THE COLLECTION OF INFORMATION AND PATIENT
DATA ON FTD DISORDERS. PATIENTS WHO DO NOT WISH TO PARTICIPATE IN THE
COLLECTION OF DATA SHALL AFFIRMATIVELY OPT-OUT IN WRITING AFTER AMPLE
OPPORTUNITY TO REVIEW SUCH NOTICE, PROVIDED THAT, THE MERE INCIDENCE OF
A PATIENT WITH AN FTD DISORDER SHALL BE THE SOLE REQUIRED INFORMATION
FOR THE REGISTRY UNDER SECTION TWO THOUSAND SEVENTEEN OF THIS ARTICLE
FOR ANY PATIENT WHO CHOOSES NOT TO PARTICIPATE.
§ 2017. ESTABLISHMENT OF REGISTRY. 1. THE DEPARTMENT SHALL ESTABLISH A
FRONTOTEMPORAL DEGENERATION REGISTRY FOR THE COLLECTION OF INFORMATION
ON THE RATE OF CLINICAL DIAGNOSES OF FTD DISORDERS. THE DEPARTMENT SHALL
CONSULT WITH FTD DISORDERS EXPERTS, INCLUDING NEUROLOGISTS, PATIENTS
LIVING WITH FTD DISORDERS, AND FTD DISORDERS 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 FRONTOTEMPORAL DEGENERATION REGISTRY TO THE FEDERAL
CENTERS FOR DISEASE CONTROL AND PREVENTION, OR SUCCESSOR AGENCY, TO
LOCAL HEALTH OFFICERS, OR HEALTH RESEARCHERS FOR THE STUDY OF FTD DISOR-
DERS 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 DEPART-
MENT SHALL CREATE AND MAINTAIN A PUBLIC WEBSITE CALLED THE "NEW YORK
STATE FRONTOTEMPORAL DEGENERATION REGISTRY" WHICH SHALL INCLUDE INFORMA-
TION ON THE RATE OF CLINICAL DIAGNOSES OF FTD DISORDERS IN THE STATE BY
COUNTY, AND DEMOGRAPHIC INFORMATION ON AFFECTED PATIENTS.
§ 2018. DUTIES OF THE DEPARTMENT. 1. FTD DISORDERS REPORTS AND DATA
SHALL BE MAINTAINED BY THE DEPARTMENT IN A MANNER SUITABLE FOR RESEARCH
PURPOSES, AND SHALL BE MADE AVAILABLE TO PERSONS AS SET FORTH IN SECTION
TWO THOUSAND SEVENTEEN OF THIS ARTICLE.
2. ALL INFORMATION COLLECTED UNDER THIS ARTICLE SHALL BE CONFIDENTIAL
INSOFAR AS THE IDENTITY OF INDIVIDUAL PATIENTS IS CONCERNED AND SHALL BE
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 SPECIFIED IN SECTION TWO THOUSAND
S. 598--B 3
SEVENTEEN OF THIS ARTICLE WITH VALID SCIENTIFIC INTEREST AND QUALIFICA-
TIONS, AS DETERMINED BY THE COMMISSIONER, WHO ARE ENGAGED IN DEMOGRAPH-
IC, EPIDEMIOLOGICAL, OR OTHER SIMILAR STUDIES RELATED TO PUBLIC HEALTH.
3. THE DEPARTMENT SHALL MAINTAIN AN ACCURATE RECORD OF ALL PERSONS WHO
ARE GIVEN ACCESS TO THE INFORMATION CONTAINED IN THE FRONTOTEMPORAL
DEGENERATION REGISTRY. SUCH 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 SECTION,
OR WHO USES INFORMATION PROVIDED UNDER THIS SECTION IN A MANNER OTHER
THAN THAT PRESCRIBED BY THE COMMISSIONER, MAY BE DENIED FURTHER ACCESS
TO ANY CONFIDENTIAL INFORMATION MAINTAINED BY THE DEPARTMENT.
§ 2019. DUTIES OF THE COMMISSIONER. THE COMMISSIONER MAY PROMULGATE
ANY REGULATIONS NECESSARY TO IMPLEMENT THE PROVISIONS OF THIS ARTICLE,
INCLUDING BUT NOT LIMITED TO:
1. ESTABLISHING THE FORM, CONTENT, AND MANNER BY WHICH PROVIDERS SHALL
REPORT FTD DISORDERS INFORMATION INTO THE REGISTRY ESTABLISHED UNDER
SECTION TWO THOUSAND SEVENTEEN OF THIS ARTICLE;
2. PRESCRIBING THE PERMISSIBLE USES FOR THE INFORMATION MADE AVAILABLE
UNDER THIS ARTICLE; AND
3. ESTABLISHING PROCEDURES TO MAINTAIN THE CONFIDENTIALITY OF INFORMA-
TION COLLECTED BY PROVIDERS AND PROVIDED TO MEMBERS OF THE DEPARTMENT
PURSUANT TO THIS ARTICLE. THIS SHALL INCLUDE A PROCEDURE TO ENSURE THAT
CONFIDENTIAL PATIENT INFORMATION IS DEIDENTIFIED PRIOR TO BEING PROVIDED
TO AUTHORIZED PARTICIPANTS UNDER THIS ARTICLE.
§ 2. This act shall take effect on the ninetieth day after it shall
have become a law.Every fact on this page links to its source, starting with the official bill record.