S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                  598--A
 
                        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
 
 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   REGISTRY
                  WEBSITE.
   § 269-A. DEFINITIONS. FOR THE PURPOSES OF THIS TITLE:
   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
 AS "FTD" AND INCLUDES, BUT IS NOT LIMITED  TO  BEHAVIORAL  VARIANT  FTD,
 PRIMARY  PROGRESSIVE  APHASIA,  CORTICOBASAL  SYNDROME,  AND PROGRESSIVE

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD02004-02-5
 S. 598--A                           2
 
 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.
   §  269-B. REGISTRY ESTABLISHED. 1. THE DEPARTMENT, IN CONJUNCTION WITH
 THE STATE OFFICE FOR THE AGING, SHALL COLLECT DATA ON THE  INCIDENCE  OF
 FTD DISORDERS IN THIS STATE AND OTHER EPIDEMIOLOGICAL DATA. THE REGISTRY
 AND SYSTEM OF COLLECTION AND DISSEMINATION OF INFORMATION 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-
 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 FTD DISORDERS AS ADVISED BY THE
 ADVISORY COMMITTEE AS A CLINICAL DIAGNOSES 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 RATE OF CLINICAL  DIAGNOSES
 OF FTD DISORDERS, 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-
 S. 598--A                           3
 
 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  FTD DISORDERS ON ITS WEBSITE AND MAY ALSO PROVIDE THAT INFORMA-
 TION TO PROFESSIONAL ASSOCIATIONS REPRESENTING PHYSICIANS, NURSE PRACTI-
 TIONERS,  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  AN  FTD DISORDER AND HAVE PRIMARY RESPONSIBILITY FOR THE TREATMENT
 AND CARE OF THE PATIENT FOR AN FTD DISORDER SHALL REPORT EACH CASE OF AN
 FTD DISORDER 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 ASSOCIATED ELECTRONIC MEDICAL RECORD
 SYSTEMS VENDORS  TO  SECURELY  AND  CONFIDENTIALLY  RECEIVE  INFORMATION
 RELATED TO FRONTOTEMPORAL DEGENERATION TESTING, DIAGNOSIS AND TREATMENT.
   4.  ALL  PATIENTS  DIAGNOSED  WITH  AN FTD DISORDER, AS ADVISED BY THE
 ADVISORY COMMITTEE, SHALL BE PROVIDED A NOTICE  IN  WRITING  AND  ORALLY
 REGARDING THE COLLECTION OF INFORMATION AND PATIENT DATA ON FRONTOTEMPO-
 RAL  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
 S. 598--A                           4
 
 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
 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 SUCH  INDIVID-
 UAL'S 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-SEVEN, 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 RATE OF CLINICAL DIAGNOSES OF FTD
 DISORDERS 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 AN
 FTD DISORDER, 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) INFORMATION RELATED TO THE COST OF CARE FOR PATIENTS WHO HAVE BEEN
 DIAGNOSED WITH AN FTD DISORDER; AND
   (I)  THE  NUMBER  OF  PATIENTS  DIAGNOSED WITH AN FTD DISORDER WHO HAD
 PREVIOUSLY RECEIVED AN  INCORRECT  DIAGNOSIS  FOR  THEIR  FRONTOTEMPORAL
 DEGENERATION  RELATED SYMPTOMS AND THE AMOUNT OF TIME IT TOOK TO RECEIVE
 THE FTD DISORDER 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 REGISTRY WEBSITE.
   § 269-D. NEW YORK STATE FRONTOTEMPORAL DEGENERATION REGISTRY  WEBSITE.
 ON  OR  BEFORE  JANUARY FIRST, TWO THOUSAND TWENTY-SEVEN, THE DEPARTMENT
 SHALL CREATE AND MAINTAIN A WEBPAGE CALLED THE "NEW YORK  STATE  FRONTO-
 S. 598--A                           5
 
 TEMPORAL  DEGENERATION  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 RELEVANT 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.