S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                  1985--A
 
                        2025-2026 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             January 14, 2025
                                ___________
 
 Introduced by M. of A. PAULIN, DE LOS SANTOS, BEEPHAN, BORES, EPSTEIN --
   read  once  and  referred  to  the  Committee  on  Health -- 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. 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
 SUPRANUCLEAR PALSY. SOME INDIVIDUALS WITH FTD MAY ALSO BE DIAGNOSED WITH
 ALS.
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD02004-03-5
 A. 1985--A                          2
              

 
   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-
 TIC CONDITIONS, CONSISTENT WITH  THE  LATEST  INTERNATIONAL  STATISTICAL
 CLASSIFICATION  OF  DISEASES  AND RELATED HEALTH PROBLEMS, AND RESULTING
 A. 1985--A                          3
 
 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
 PERSON,  AGENCY OR ENTITY FURNISHING INFORMATION TO LIABILITY, AND SHALL
 A. 1985--A                          4
 
 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-
 TEMPORAL  DEGENERATION  REGISTRY"  WHERE THE PUBLIC MAY VIEW INFORMATION
 A. 1985--A                          5
 
 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.