S T A T E O F N E W Y O R K
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9938
I N A S S E M B L Y
April 26, 2024
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Introduced by M. of A. PAULIN -- read once and referred to the Committee
on Health
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. Article 2 of the public health law is amended by adding a
new title 9 to read as follows:
TITLE IX
STATE FRONTOTEMPORAL DEGENERATION
REGISTRY
SECTION 269-A. DEFINITIONS.
269-B. REGISTRY ESTABLISHED.
269-C. REPORTS.
269-D. NEW YORK STATE FRONTOTEMPORAL DEGENERATION RESEARCH
REGISTRY WEBSITE.
§ 269-A. DEFINITIONS. FOR THE PURPOSES OF THIS TITLE:
1. "FRONTOTEMPORAL DEGENERATION" MEANS A GROUP OF DISORDERS CAUSED BY
PROGRESSIVE NERVE CELL LOSS IN THE BRAIN'S FRONTAL LOBES OR ITS 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. FOR THE PURPOSES OF THIS
TITLE FRONTOTEMPORAL DEGENERATION IS THE SAME AS "FTD".
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 INCLUDES BUT IS NOT LIMITED TO FTD,
ALZHEIMER'S DISEASE, LEWY BODY DEMENTIA AND VASCULAR DEMENTIA.
§ 269-B. REGISTRY ESTABLISHED. 1. THE DEPARTMENT, IN CONJUNCTION WITH
THE STATE OFFICE FOR THE AGING, SHALL COLLECT DATA ON THE INCIDENCE OF
FRONTOTEMPORAL DEGENERATION IN THIS STATE AND OTHER EPIDEMIOLOGICAL
DATA. THE REGISTRY AND SYSTEM OF COLLECTION AND DISSEMINATION OF INFOR-
MATION SHALL BE UNDER THE DIRECTION OF THE COMMISSIONER, WHO MAY ENTER
INTO CONTRACTS, GRANTS OR OTHER AGREEMENTS AS ARE NECESSARY FOR THE
CONDUCT OF THE REGISTRY.
2. (A) THE DEPARTMENT SHALL, WITHIN NINETY DAYS OF THE EFFECTIVE DATE
OF THIS SECTION, ESTABLISH A FRONTOTEMPORAL DEGENERATION REGISTRY ADVI-
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD11799-03-3
A. 9938 2
SORY COMMITTEE TO ASSIST IN THE DEVELOPMENT AND IMPLEMENTATION OF THE
REGISTRY; DETERMINE WHAT DATA SHALL BE COLLECTED, IN ADDITION TO THE
DATA REQUIRED BY SECTION TWO HUNDRED SIXTY-NINE-C OF THIS TITLE FOR
ANNUAL REPORTS; AND GENERALLY, ADVISE THE DEPARTMENT. FOLLOWING THE
COMPLETION OF THE REGISTRY, THE ADVISORY COMMITTEE SHALL ASSIST THE
DEPARTMENT WITH THE CREATION AND PUBLICATION OF THE REPORTS REQUIRED BY
SECTION TWO HUNDRED SIXTY-NINE-C OF THIS TITLE.
(B) MEMBERS OF THE COMMITTEE SHALL BE SELECTED BY THE GOVERNOR, THE
LEGISLATURE AND THE COMMISSIONER. THE GOVERNOR, THE TEMPORARY PRESIDENT
OF THE SENATE, THE SPEAKER OF THE ASSEMBLY AND THE COMMISSIONER SHALL
EACH SELECT TWO COMMITTEE MEMBERS AND THE MINORITY LEADERS OF THE SENATE
AND THE ASSEMBLY SHALL EACH SELECT ONE COMMITTEE MEMBER. MEMBERSHIP OF
THE COMMITTEE SHALL INCLUDE:
(I) A NEUROLOGIST;
(II) A SPEECH PATHOLOGIST;
(III) A PRIMARY CARE PROVIDER;
(IV) A PHYSICIAN INFORMATICIST;
(V) A PATIENT LIVING WITH FRONTOTEMPORAL DEGENERATION;
(VI) A CAREGIVER OF A PATIENT LIVING WITH FRONTOTEMPORAL DEGENERATION;
(VII) A PUBLIC HEALTH PROFESSIONAL;
(VIII) A POPULATION HEALTH RESEARCHER FAMILIAR WITH REGISTRIES;
(IX) A FRONTOTEMPORAL DEGENERATION RESEARCHER;
(X) A MEMBER OF AN ORGANIZATION THAT RAISES AWARENESS ABOUT AND
PROMOTES RESEARCH FOR THE TREATMENT OF FRONTOTEMPORAL DEGENERATION; AND
(XI) ANYONE ELSE THE COMMISSIONER DEEMS NECESSARY.
3. (A) THE DEPARTMENT SHALL DESIGNATE FRONTOTEMPORAL DEGENERATION AND
RELATED DEMENTIAS AS ADVISED BY THE ADVISORY COMMITTEE AS DEMENTIAS
REQUIRED TO BE REPORTED IN THE STATE OR ANY PART OF THE STATE.
(B) THE DEPARTMENT SHALL ESTABLISH A SYSTEM FOR THE COLLECTION AND
DISSEMINATION OF INFORMATION DETERMINING THE INCIDENCE AND PREVALENCE OF
FRONTOTEMPORAL DEGENERATION AND RELATED DEMENTIAS, AS ADVISED BY THE
ADVISORY COMMITTEE.
(C) ALL CASES OF FRONTOTEMPORAL DEGENERATION DIAGNOSED OR TREATED IN
THIS STATE SHALL BE REPORTED TO THE DEPARTMENT, PROVIDED THE MERE INCI-
DENCE OF A PATIENT WITH FRONTOTEMPORAL DEGENERATION SHALL BE THE SOLE
REQUIRED INFORMATION FOR THIS REGISTRY FOR ANY PATIENT WHO CHOOSES NOT
TO PARTICIPATE. FOR THE SUBSET OF PATIENTS WHO CHOOSE NOT TO PARTIC-
IPATE, NO FURTHER DATA SHALL BE REPORTED TO THE REGISTRY. THE DEPARTMENT
MAY CREATE, REVIEW AND REVISE A LIST OF DATA POINTS REQUIRED AS PART OF
MANDATED FRONTOTEMPORAL DEGENERATION REPORTING UNDER THIS SECTION. SUCH
LIST SHALL INCLUDE, BUT NOT BE LIMITED TO NECESSARY TRIGGERING DIAGNOS-
TIC CONDITIONS, CONSISTENT WITH THE LATEST INTERNATIONAL STATISTICAL
CLASSIFICATION OF DISEASES AND RELATED HEALTH PROBLEMS, AND RESULTING
CASE DATA INCLUDING, BUT NOT LIMITED TO, DIAGNOSIS, TREATMENT AND
SURVIVAL. THE DEPARTMENT MAY IMPLEMENT AND ADMINISTER THIS PARAGRAPH
THROUGH A BULLETIN, OR SIMILAR INSTRUCTION, TO PROVIDERS WITHOUT TAKING
REGULATORY ACTION.
(D) THE DEPARTMENT SHALL PROVIDE NOTIFICATION OF THE MANDATORY REPORT-
ING OF FRONTOTEMPORAL DEGENERATION AND OTHER RELATED DEMENTIAS ON ITS
WEBSITE AND MAY ALSO PROVIDE THAT INFORMATION TO PROFESSIONAL ASSOCI-
ATIONS REPRESENTING PHYSICIANS, NURSE PRACTITIONERS, AND HOSPITALS AT
LEAST NINETY DAYS PRIOR TO REQUIRING INFORMATION BE REPORTED.
(E) A HOSPITAL, FACILITY, PHYSICIAN, SURGEON, PHYSICIAN ASSISTANT AND
NURSE PRACTITIONERS WHO DIAGNOSE OR ARE TREATING A PATIENT DIAGNOSED
WITH FRONTOTEMPORAL DEGENERATION OR OTHER DEMENTIAS AND HAVE PRIMARY
RESPONSIBILITY FOR THE TREATMENT AND CARE OF THE PATIENT FOR FRONTOTEM-
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PORAL DEGENERATION OR OTHER DEMENTIAS SHALL REPORT EACH CASE OF FRONTO-
TEMPORAL DEGENERATION OR OTHER DEMENTIAS TO THE DEPARTMENT IN A FORMAT
PRESCRIBED BY THE DEPARTMENT. THE DEPARTMENT IS AUTHORIZED TO ENTER
INTO DATA SHARING CONTRACTS WITH DATA REPORTING ENTITIES AND THEIR ASSO-
CIATED ELECTRONIC MEDICAL RECORD SYSTEMS VENDORS TO SECURELY AND CONFI-
DENTIALLY RECEIVE INFORMATION RELATED TO FRONTOTEMPORAL DEGENERATION
TESTING, DIAGNOSIS AND TREATMENT.
4. ALL PATIENTS DIAGNOSED WITH FRONTOTEMPORAL DEGENERATION OR OTHER
DEMENTIAS, AS ADVISED BY THE ADVISORY COMMITTEE, SHALL BE PROVIDED A
NOTICE IN WRITING AND ORALLY REGARDING THE COLLECTION OF INFORMATION AND
PATIENT DATA ON FRONTOTEMPORAL DEGENERATION. PATIENTS WHO DO NOT WISH TO
PARTICIPATE IN THE COLLECTION OF DATA FOR PURPOSES OF RESEARCH IN THIS
REGISTRY SHALL AFFIRMATIVELY OPT-OUT IN WRITING AFTER AN OPPORTUNITY TO
REVIEW THE DOCUMENTS AND ASK QUESTIONS. THE PATIENT'S CAREGIVER MAY
OPT-OUT ON THE PATIENT'S BEHALF, IF THE PATIENT IS UNABLE TO DO SO OF
THEIR OWN ACCORD. NO PATIENT SHALL BE REQUIRED TO PARTICIPATE IN THIS
REGISTRY.
5. THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO FURNISH DATA COLLECTED
IN THIS REGISTRY TO OTHER STATES' FRONTOTEMPORAL DEGENERATION REGIS-
TRIES, FEDERAL FRONTOTEMPORAL DEGENERATION CONTROL AGENCIES, LOCAL
HEALTH OFFICERS, OR HEALTH RESEARCHERS FOR THE STUDY OF FRONTOTEMPORAL
DEGENERATION. BEFORE CONFIDENTIAL INFORMATION IS DISCLOSED TO THOSE
AGENCIES, OFFICERS, RESEARCHERS, OR OUT-OF-STATE REGISTRIES, THE
REQUESTING ENTITY SHALL AGREE IN WRITING TO MAINTAIN THE CONFIDENTIALITY
OF THE INFORMATION, AND IN THE CASE OF RESEARCHERS, SHALL ALSO DO BOTH
OF THE FOLLOWING:
(A) OBTAIN APPROVAL OF THEIR COMMITTEE FOR THE PROTECTION OF HUMAN
SUBJECTS ESTABLISHED IN ACCORDANCE WITH PART 46 (COMMENCING WITH SECTION
46.101) OF TITLE 45 OF THE CODE OF FEDERAL REGULATIONS; AND
(B) PROVIDE DOCUMENTATION TO THE DEPARTMENT THAT DEMONSTRATES TO THE
DEPARTMENT'S SATISFACTION THAT THE ENTITY HAS ESTABLISHED THE PROCEDURES
AND ABILITY TO MAINTAIN THE CONFIDENTIALITY OF THE INFORMATION.
6. EXCEPT AS OTHERWISE PROVIDED IN THIS SECTION, ALL INFORMATION
COLLECTED PURSUANT TO THIS SECTION SHALL BE CONFIDENTIAL. FOR PURPOSES
OF THIS SECTION, THIS INFORMATION SHALL BE REFERRED TO AS CONFIDENTIAL
INFORMATION. TO ENSURE PRIVACY, THE DEPARTMENT SHALL PROMULGATE A CODING
SYSTEM THAT REMOVES ANY IDENTIFYING INFORMATION ABOUT THE PATIENT.
7. (A) NOTWITHSTANDING ANY OTHER LAW, A DISCLOSURE AUTHORIZED BY THIS
SECTION SHALL INCLUDE ONLY THE INFORMATION NECESSARY FOR THE STATED
PURPOSE OF THE REQUESTED DISCLOSURE, USED FOR THE APPROVED PURPOSE, AND
NOT BE FURTHER DISCLOSED.
(B) PROVIDED THE SECURITY OF CONFIDENTIALITY HAS BEEN DOCUMENTED, THE
FURNISHING OF CONFIDENTIAL INFORMATION TO THE DEPARTMENT OR ITS AUTHOR-
IZED REPRESENTATIVE IN ACCORDANCE WITH THIS SECTION SHALL NOT EXPOSE ANY
PERSON, AGENCY OR ENTITY FURNISHING INFORMATION TO LIABILITY, AND SHALL
NOT BE CONSIDERED A WAIVER OF ANY PRIVILEGE OR A VIOLATION OF A CONFI-
DENTIAL RELATIONSHIP.
(C) THE DEPARTMENT SHALL MAINTAIN AN ACCURATE RECORD OF ALL PERSONS
WHO ARE GIVEN ACCESS TO CONFIDENTIAL INFORMATION. THE RECORD SHALL
INCLUDE: THE NAME OF THE PERSON AUTHORIZING ACCESS; NAME, TITLE,
ADDRESS, AND ORGANIZATIONAL AFFILIATION OF PERSONS GIVEN ACCESS; DATES
OF ACCESS; AND THE SPECIFIC PURPOSE FOR WHICH INFORMATION IS TO BE USED.
THE RECORD OF ACCESS SHALL BE OPEN TO PUBLIC INSPECTION DURING NORMAL
OPERATING HOURS OF THE DEPARTMENT.
(D) NOTWITHSTANDING ANY OTHER LAW, CONFIDENTIAL INFORMATION SHALL NOT
BE AVAILABLE FOR SUBPOENA, SHALL NOT BE DISCLOSED, DISCOVERABLE OR
A. 9938 4
COMPELLED TO BE PRODUCED IN ANY CIVIL, CRIMINAL, ADMINISTRATIVE OR OTHER
PROCEEDING. CONFIDENTIAL INFORMATION SHALL NOT BE DEEMED ADMISSIBLE AS
EVIDENCE IN ANY CIVIL, CRIMINAL, ADMINISTRATIVE OR OTHER TRIBUNAL OR
COURT FOR ANY REASON.
(E) THIS SUBDIVISION DOES NOT PROHIBIT THE PUBLICATION BY THE DEPART-
MENT OF REPORTS AND STATISTICAL COMPILATIONS THAT DO NOT IN ANY WAY
IDENTIFY INDIVIDUAL CASES OR INDIVIDUAL SOURCES OF INFORMATION.
(F) NOTWITHSTANDING THE RESTRICTIONS IN THIS SUBDIVISION, THE INDIVID-
UAL TO WHOM THE INFORMATION PERTAINS SHALL HAVE ACCESS TO HIS OR HER OWN
INFORMATION.
8. THIS SECTION DOES NOT PREEMPT THE AUTHORITY OF FACILITIES OR INDI-
VIDUALS PROVIDING DIAGNOSTIC OR TREATMENT SERVICES TO PATIENTS WITH
FRONTOTEMPORAL DEGENERATION TO MAINTAIN THEIR OWN FACILITY-BASED FRONTO-
TEMPORAL DEGENERATION REGISTRIES.
§ 269-C. REPORTS. 1. ON OR BEFORE JANUARY FIRST, TWO THOUSAND TWEN-
TY-FIVE, AND EVERY YEAR THEREAFTER, THE DEPARTMENT, IN CONJUNCTION WITH
THE ADVISORY COMMITTEE, SHALL REPORT TO THE LEGISLATURE AND GOVERNOR A
YEARLY PROGRAM SUMMARY UPDATE ON THE INCIDENCE AND PREVALENCE OF FRONTO-
TEMPORAL DEGENERATION IN THE STATE. SUCH REPORT SHALL INCLUDE:
(A) THE INCIDENCE AND PREVALENCE OF FRONTOTEMPORAL DEGENERATION BY
COUNTY;
(B) HOW MANY RECORDS HAVE BEEN INCLUDED AND REPORTED INTO THE REGIS-
TRY;
(C) DEMOGRAPHIC INFORMATION SUCH AS PATIENTS BY AGE, GENDER AND RACE;
(D) THE NUMBER OF NEW DIAGNOSES IN THE PRECEDING YEAR;
(E) A SUMMARY OF ADVANCEMENTS IN THE TREATMENT AND NEWLY DEVELOPED
TREATMENTS OF FRONTOTEMPORAL DEGENERATION;
(F) A LIST OF RESOURCES FOR THE FAMILIES OF PATIENTS DIAGNOSED WITH
FRONTOTEMPORAL DEGENERATION AND OTHER DEMENTIAS, WHICH SHALL INCLUDE BUT
NOT BE LIMITED TO SUPPORT FROM THE STATE OR FEDERAL GOVERNMENT, SUPPORT
GROUPS AND HELPLINES;
(G) THE RESOURCES AVAILABLE FOR THE CARE OF PATIENTS WITH FRONTOTEMPO-
RAL DEGENERATION BY REGION;
(H) THE AVERAGE YEARLY COST OF CARE FOR A PATIENT WITH FRONTOTEMPORAL
DEGENERATION; AND
(I) THE NUMBER OF PATIENTS WITH FRONTOTEMPORAL DEGENERATION WHO HAD
PREVIOUSLY RECEIVED AN INCORRECT DIAGNOSIS FOR THEIR FRONTOTEMPORAL
DEGENERATION RELATED SYMPTOMS AND THE AMOUNT OF TIME IT TOOK TO RECEIVE
THE CORRECT DIAGNOSIS.
2. THE YEARLY REPORT SHALL BE PUBLISHED IN A DOWNLOADABLE FORMAT ON
THE DEPARTMENT'S WEBSITE AND THE DESIGNATED NEW YORK STATE FRONTOTEMPO-
RAL DEGENERATION RESEARCH REGISTRY WEBSITE.
§ 269-D. NEW YORK STATE FRONTOTEMPORAL DEGENERATION RESEARCH REGISTRY
WEBSITE. ON OR BEFORE JANUARY FIRST, TWO THOUSAND TWENTY-FIVE, THE
DEPARTMENT SHALL CREATE AND MAINTAIN A WEBPAGE CALLED THE "NEW YORK
STATE FRONTOTEMPORAL DEGENERATION RESEARCH REGISTRY" WHERE THE PUBLIC
MAY VIEW INFORMATION RELATED TO THE REGISTRY, A YEARLY PROGRAM SUMMARY,
THE INFORMATION REQUIRED TO BE INCLUDED IN THE YEARLY REPORTS PURSUANT
TO SECTION TWO HUNDRED SIXTY-NINE-C OF THIS TITLE, AND ANY OTHER RELE-
VANT OR HELPFUL INFORMATION RELATED TO THE REGISTRY AS DEEMED NECESSARY
BY THE ADVISORY COUNCIL.
§ 2. This act shall take effect on the thirtieth day after it shall
have become a law.