S T A T E O F N E W Y O R K
________________________________________________________________________
4674
2023-2024 Regular Sessions
I N S E N A T E
February 13, 2023
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Introduced by Sen. HOYLMAN-SIGAL -- read twice and ordered printed, and
when printed to be committed to the Committee on Health
AN ACT to amend the public health law, in relation to establishing a
state Parkinson's disease 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 PARKINSON'S DISEASE REGISTRY
SECTION 269-A. DEFINITIONS.
269-B. REGISTRY ESTABLISHED.
269-C. REPORTS.
269-D. NEW YORK STATE PARKINSON'S DISEASE RESEARCH REGISTRY
WEBSITE.
§ 269-A. DEFINITIONS. FOR THE PURPOSES OF THIS TITLE:
1. "PARKINSON'S DISEASE" MEANS A CHRONIC AND PROGRESSIVE NEUROLOGIC
DISORDER RESULTING FROM DEFICIENCY OF THE NEUROTRANSMITTER DOPAMINE AS
THE CONSEQUENCE OF SPECIFIC DEGENERATIVE CHANGES IN THE AREA OF THE
BRAIN CALLED THE BASAL GANGLIA. IT IS CHARACTERIZED BY TREMOR AT REST,
SLOW MOVEMENTS, MUSCLE RIGIDITY, STOOPED POSTURE, AND UNSTEADY OR SHUF-
FLING GAIT.
2. "PARKINSONISMS" MEANS RELATED CONDITIONS THAT CAUSE A COMBINATION
OF THE MOVEMENT ABNORMALITIES SEEN IN PARKINSON'S DISEASE, SUCH AS TREM-
OR AT REST, SLOW MOVEMENT, MUSCLE RIGIDITY, IMPAIRED SPEECH OR MUSCLE
STIFFNESS, WHICH OFTEN OVERLAP WITH AND CAN EVOLVE FROM WHAT APPEARS TO
BE PARKINSON'S DISEASE. PARKINSONISMS INCLUDE, BUT ARE NOT EXCLUSIVE TO,
THE FOLLOWING: MULTIPLE SYSTEM ATROPHY (MSA), DEMENTIA WITH LEWY BODIES
(DLB), CORTICOBASAL DEGENERATION (CBD), AND PROGRESSIVE SUPRANUCLEAR
PALSY (PSP).
EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
[ ] is old law to be omitted.
LBD08983-01-3
S. 4674 2
§ 269-B. REGISTRY ESTABLISHED. 1. THE DEPARTMENT SHALL COLLECT DATA ON
THE INCIDENCE OF PARKINSON'S DISEASE IN THIS STATE AND OTHER EPIDEMIO-
LOGICAL 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 PARKINSON'S DISEASE REGISTRY ADVISORY
COMMITTEE TO ASSIST IN THE DEVELOPMENT AND IMPLEMENTATION OF THE REGIS-
TRY; DETERMINE WHAT DATA SHALL BE COLLECTED; AND GENERALLY, ADVISE THE
DEPARTMENT.
(B) THE COMMISSIONER SHALL SELECT THE MEMBERS OF THE COMMITTEE.
MEMBERSHIP OF THE COMMITTEE SHALL INCLUDE:
(I) A NEUROLOGIST;
(II) A MOVEMENT DISORDER SPECIALIST;
(III) A PRIMARY CARE PROVIDER;
(IV) A PHYSICIAN INFORMATICIST;
(V) A PATIENT LIVING WITH PARKINSON'S DISEASE;
(VI) A PUBLIC HEALTH PROFESSIONAL;
(VII) A POPULATION HEALTH RESEARCHER FAMILIAR WITH REGISTRIES;
(VIII) A PARKINSON'S DISEASE RESEARCHER; AND
(IX) ANYONE ELSE THE COMMISSIONER DEEMS NECESSARY.
3. (A) THE DEPARTMENT SHALL DESIGNATE PARKINSON'S DISEASE AND RELATED
PARKINSONISMS AS ADVISED BY THE ADVISORY COMMITTEE AS DISEASES 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
PARKINSON'S DISEASE AND RELATED PARKINSONISMS, AS ADVISED BY THE ADVI-
SORY COMMITTEE.
(C) ALL CASES OF PARKINSON'S DISEASE DIAGNOSED OR TREATED IN THIS
STATE SHALL BE REPORTED TO THE DEPARTMENT, PROVIDED THE MERE INCIDENCE
OF A PATIENT WITH PARKINSON'S DISEASE SHALL BE THE SOLE REQUIRED INFOR-
MATION FOR THIS REGISTRY FOR ANY PATIENT WHO CHOOSES NOT TO PARTICIPATE.
FOR THE SUBSET OF PATIENTS WHO CHOOSE NOT TO PARTICIPATE, 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
PARKINSON'S DISEASE REPORTING UNDER THIS SECTION. SUCH LIST SHALL
INCLUDE, BUT NOT BE LIMITED TO NECESSARY TRIGGERING DIAGNOSTIC CONDI-
TIONS, CONSISTENT WITH THE LATEST INTERNATIONAL STATISTICAL CLASSIFICA-
TION 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 BULLE-
TIN, OR SIMILAR INSTRUCTION, TO PROVIDERS WITHOUT TAKING REGULATORY
ACTION.
(D) THE DEPARTMENT SHALL PROVIDE NOTIFICATION OF THE MANDATORY REPORT-
ING OF PARKINSON'S DISEASE AND PARKINSONISMS ON ITS WEBSITE AND MAY ALSO
PROVIDE THAT INFORMATION TO PROFESSIONAL ASSOCIATIONS 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 PARKINSON'S DISEASE OR PARKINSONISMS AND HAVE PRIMARY RESPONSIBIL-
ITY FOR THE TREATMENT AND CARE OF THE PATIENT FOR PARKINSON'S DISEASE OR
PARKINSONISMS SHALL REPORT EACH CASE OF PARKINSON'S DISEASE AND PARKIN-
SONISMS TO THE DEPARTMENT IN A FORMAT PRESCRIBED BY THE DEPARTMENT. THE
DEPARTMENT IS AUTHORIZED TO ENTER INTO DATA SHARING CONTRACTS WITH DATA
S. 4674 3
REPORTING ENTITIES AND THEIR ASSOCIATED ELECTRONIC MEDICAL RECORD
SYSTEMS VENDORS TO SECURELY AND CONFIDENTIALLY RECEIVE INFORMATION
RELATED TO PARKINSON'S DISEASE TESTING, DIAGNOSIS AND TREATMENT.
4. ALL PATIENTS DIAGNOSED WITH PARKINSON'S DISEASE OR PARKINSONISMS,
AS ADVISED BY THE ADVISORY COMMITTEE, SHALL BE PROVIDED A NOTICE IN
WRITING AND ORALLY REGARDING THE COLLECTION OF INFORMATION AND PATIENT
DATA ON PARKINSON'S DISEASE. 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. NO PATIENT SHALL BE FORCED TO PARTICIPATE
IN THIS REGISTRY.
5. THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO FURNISH DATA COLLECTED
IN THIS REGISTRY TO OTHER STATES' PARKINSON'S DISEASE REGISTRIES, FEDER-
AL PARKINSON'S DISEASE CONTROL AGENCIES, LOCAL HEALTH OFFICERS, OR
HEALTH RESEARCHERS FOR THE STUDY OF PARKINSON'S DISEASE. BEFORE CONFI-
DENTIAL INFORMATION IS DISCLOSED TO THOSE AGENCIES, OFFICERS, RESEARCH-
ERS, 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
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.
S. 4674 4
(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
PARKINSON'S DISEASE TO MAINTAIN THEIR OWN FACILITY-BASED PARKINSON'S
DISEASE REGISTRIES.
§ 269-C. REPORTS. ON OR BEFORE JANUARY FIRST, TWO THOUSAND TWENTY-
FIVE, AND EVERY YEAR THEREAFTER, THE DEPARTMENT SHALL REPORT TO THE
LEGISLATURE AND GOVERNOR A YEARLY PROGRAM SUMMARY UPDATE ON THE INCI-
DENCE AND PREVALENCE OF PARKINSON'S DISEASE IN THE STATE BY COUNTY, HOW
MANY RECORDS HAVE BEEN INCLUDED AND REPORTED INTO THE REGISTRY, AND
DEMOGRAPHIC INFORMATION SUCH AS PATIENTS BY AGE, GENDER AND RACE. THIS
YEARLY REPORT SHALL ALSO BE PUBLISHED IN A DOWNLOADABLE FORMAT ON THE
DEPARTMENT'S WEBSITE OR THE DESIGNATED NEW YORK STATE PARKINSON'S
DISEASE RESEARCH REGISTRY WEBSITE.
§ 269-D. NEW YORK STATE PARKINSON'S DISEASE 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
PARKINSON'S DISEASE RESEARCH REGISTRY" WHERE THE PUBLIC MAY VIEW INFOR-
MATION RELATED TO THE REGISTRY, A YEARLY PROGRAM SUMMARY, AND ANY OTHER
RELEVANT OR HELPFUL INFORMATION RELATED TO THE REGISTRY AS DEEMED NECES-
SARY BY THE ADVISORY COUNCIL.
§ 2. This act shall take effect on the thirtieth day after it shall
have become a law.
