EXPLANATION: CAPITALS INDICATE MAT TER ADDED TO EXISTIN G LAW.
[Brackets] indicate matter deleted from existing law.
Underlining indicates amendments to bill.
Strike out indicates matter stricken from the bill by amendment or deleted from the law by
amendment.
*hb0703*
HOUSE BILL 703
J1 3lr1884
CF SB 584
By: Delegate Kerr Delegates Kerr, Pena–Melnyk, Cullison, Alston, Bagnall,
Bhandari, Chisholm, Guzzone, Hill, Hutchinson, S. Johnson, Kaiser, Kipke,
R. Lewis, Lopez, Martinez, M. Morgan, Reilly, Rosenberg, Szeliga, Taveras,
White, and Woods
Introduced and read first time: February 6, 2023
Assigned to: Health and Government Operations
Committee Report: Favorable with amendments
House action: Adopted
Read second time: March 21, 2023
CHAPTER ______
AN ACT concerning 1
Public Health – Parkinson’s Disease Registry – Established Advisory Committee 2
and Website 3
FOR the purpose of establishing a Parkinson’s Disease Registry in the Maryland 4
Department of Health; requiring the Department to collect certain data for the 5
Registry; authorizing the Department to share certain information in the Registry 6
with certain entities under certain conditions; providing for the confidentiality of 7
information collected under this Act; requiring the Department to maintain a record 8
of individuals granted access to confidential information in the Registry; altering the 9
duties of the Parkinson’s Disease Registry Advisory Committee; requiring the 10
Committee to meet on a certain basis beginning on a certain date, rather than with 11
the frequency established by the Secretary of Health; requiring the Maryland 12
Department of Health, in collaboration with the State –designated health 13
information exchange, to establish and maintain a certain website that has certain 14
information related to Parkinson’s disease; and generally relating to the 15
establishment of a Parkinson’s Disease Registry Parkinson’s disease. 16
BY repealing and reenacting, without amendments, 17
Article – Health – General 18
Section 18–1202 19
Annotated Code of Maryland 20
(2019 Replacement Volume and 2022 Supplement) 21 2 HOUSE BILL 703
BY repealing and reenacting, with amendments, 1
Article – Health – General 2
Section 18–1201 and 18–1203 3
Annotated Code of Maryland 4
(2019 Replacement Volume and 2022 Supplement) 5
BY repealing 6
Article – Health – General 7
Section 18–1202 8
Annotated Code of Maryland 9
(2019 Replacement Volume and 2022 Supplement) 10
BY adding to 11
Article – Health – General 12
Section 18–1202 and 18–1204 through 18–1210 13
Annotated Code of Maryland 14
(2019 Replacement Volume and 2022 Supplement) 15
SECTION 1. BE IT ENACTED BY THE GENERAL ASSEMBLY OF MARYLAND, 16
That the Laws of Maryland read as follows: 17
Article – Health – General 18
18–1201. 19
(a) In this subtitle the following words have the meanings indicated. 20
(b) “Advisory Committee” means the Parkinson’s Disease Registry Advisory 21
Committee. 22
(c) (1) “PARKINSONISMS ” MEANS CONDITIONS REL ATED TO 23
PARKINSON’S DISEASE THAT CAUSE A COMBINATION OF THE MOVEMENT 24
ABNORMALITIES SEEN I N PARKINSON’S DISEASE. 25
(2) “PARKINSONISMS ” INCLUDES MULTIPLE SY STEM ATROPHY , 26
DEMENTIA WITH LEWY BODIES, CORTICOBASAL DEGENER ATION, AND PROGRESSIVE 27
SUPRANUCLEAR PALSY . 28
(D) “Parkinson’s disease” means a chronic and progressive disorder resulting from 29
deficiency of the neurotransmitter dopamine as the consequence of specific degenerative 30
changes in the area of the brain called the basal ganglia, characterized by tremors at rest, 31
slow movements, muscle rigidity, stooped posture, and unsteady or shuffling gait. 32
(E) “REGISTRY” MEANS THE PARKINSON’S DISEASE REGISTRY. 33
HOUSE BILL 703 3
[18–1202. 1
There is a Parkinson’s Disease Registry Advisory Committee in the Department.] 2
18–1202. 3
THERE IS A PARKINSON’S DISEASE REGISTRY IN THE DEPARTMENT . 4
18–1203. 5
(A) THERE IS A PARKINSON’S DISEASE REGISTRY ADVISORY COMMITTEE 6
IN THE DEPARTMENT . 7
[(a)] (B) The Advisory Committee shall: 8
(1) Assist in the development and implementation of a STATE Parkinson’s 9
Disease Registry; 10
(2) Determine what data shall be collected and be stored in a STATE 11
Parkinson’s Disease Registry and the methods to ensure the privacy and confidentiality of 12
data collected and stored in the registry; and 13
(3) Advise the Department on Parkinson’s disease and maintaining a 14
STATE Parkinson’s Disease Registry; AND 15
(4) CONSULT WITH ENTITIES THAT MAY BE ABLE TO COLLECT DATA 16
AND WORK IN PARTNERS HIP WITH THE FEDERAL CENTERS FOR DISEASE CONTROL 17
AND PREVENTION TO AID THE FEDERAL CENTERS FOR DISEASE CONTROL AND 18
PREVENTION IN CREATIN G A NATIONAL PARKINSON’S DISEASE REGISTRY. 19
(B) ENTITIES THAT MAY BE CONSULTED UNDER SUBS ECTION (A)(4) OF THIS 20
SECTION INCLUDE : 21
(1) THE STATE–DESIGNATED HEALTH IN FORMATION EXCHANGE ; 22
(2) NONPROFIT ORGANIZATIO NS; AND 23
(3) COLLEGES OR UNIVERSIT IES. 24
[(b)] (C) (1) The Secretary shall appoint individuals to serve on the Advisory 25
Committee, including: 26
(i) A neurologist; 27
(ii) A movement disorder specialist; 28 4 HOUSE BILL 703
(iii) A primary care provider; 1
(iv) A physician informaticist; 2
(v) A patient with Parkinson’s disease; 3
(vi) A public health professional; 4
(vii) A population health researcher familiar with disease registries; 5
(viii) A Parkinson’s disease researcher; and 6
(ix) Any other individuals the Secretary determines are necessary. 7
(2) The Secretary shall establish: 8
(i) The duration of term limits for members of the Advisory 9
Committee; 10
(ii) The frequency of meetings of the Advisory Committee; 11
(iii) Rules and procedures for conducting business of the Advisory 12
Committee; and 13
(iv) (III) Any other rules necessary for the Advisory Committee to 14
function effectively. 15
(D) BEGINNING JULY 1, 2023, THE ADVISORY COMMITTEE SHALL MEET AT 16
LEAST QUARTERLY . 17
18–1204. 18
(A) THE DEPARTMENT SHALL COLL ECT DATA FOR THE REGISTRY, 19
INCLUDING DATA ON THE INC IDENCE OF PARKINSON’S DISEASE IN THE STATE AND 20
RELATED EPIDEMIOLOGI CAL DATA. 21
(B) THE ADVISORY COMMITTEE, IN CONSULTATION WITH THE 22
DEPARTMENT , SHALL: 23
(1) IDENTIFY CATEGORIES O F DATA TO BE COLLECT ED FOR THE 24
REGISTRY RELATED TO : 25
(I) PATIENT DEMOGRAPHICS , INCLUDING GEOGRAPHY ; AND 26
(II) DIAGNOSES; AND 27 HOUSE BILL 703 5
(2) PERIODICALLY REVIEW T HE DATA COLLECTED FO R THE 1
REGISTRY TO ASSESS WH ETHER THE: 2
(I) DATA INCLUDES SUFFICI ENT INFORMATION TO E NSURE 3
THERE ARE NO DUPLICA TED PATIENT RECORDS IN THE REGISTRY; AND 4
(II) CATEGORIES OF DATA CO LLECTED SHOULD BE AL TERED. 5
18–1205. 6
(A) (1) UNLESS OTHERWISE PROV IDED IN THIS SUBTITL E, ALL 7
INFORMATION COLLECTE D FOR THE REGISTRY UNDER THIS S UBTITLE SHALL BE 8
CONFIDENTIAL . 9
(2) THE DEPARTMENT SHALL IMPLEMENT A CODING S YSTEM THAT 10
REMOVES ANY PERSONAL LY IDENTIFIABLE INFO RMATION OF AN INDIVI DUAL FROM 11
COLLECTED DATA . 12
(B) THE DEPARTMENT , IN CONSULTATION WITH THE ADVISORY 13
COMMITTEE, SHALL ESTABLISH A SY STEM FOR THE COLLECT ION OF DATA FOR THE 14
REGISTRY AND DISSEMINATION OF INF ORMATION DETERMINING THE INCIDENCE 15
AND PREVALENCE OF PARKINSON’S DISEASE AND RELATE D PARKINSONISMS . 16
(C) (1) THE DEPARTMENT , IN CONSULTATION WITH THE ADVISORY 17
COMMITTEE, SHALL: 18
(I) NOTIFY, IN WRITING AND ORALL Y, ALL INDIVIDUALS I N THE 19
STATE DIAGNOSED WITH PARKINSON’S DISEASE OR RELATED PARKINSONISMS 20
ABOUT THE CREATION O F THE REGISTRY, DATA COLLECTION ASSO CIATED WITH 21
THE REGISTRY, AND THE RIGHT TO OPT OUT OF PARTICIPATION IN THE REGISTRY; 22
AND 23
(II) PROVIDE AN OPPORTUNIT Y TO OPT OUT OF PARTICIPATION 24
IN THE REGISTRY. 25
(2) (I) AN INDIVIDUAL WITH PARKINSON’S DISEASE OR RELATED 26
PARKINSONISMS MAY OP T OUT OF PARTICIPATI NG IN THE REGISTRY BY 27
SUBMITTING WRITTEN N OTICE TO THE DEPARTMENT . 28
(II) IF AN INDIVIDUAL OPTS OUT OF PARTICIPATION IN THE 29
REGISTRY, THE DEPARTMENT : 30
6 HOUSE BILL 703
1. SHALL RECORD AN INCID ENCE OF A PATIENT WI TH 1
PARKINSON’S DISEASE; AND 2
2. MAY NOT RECORD ANY AD DITIONAL INFORMATION 3
ABOUT THE INDIVIDUAL . 4
(D) THE DEPARTMENT MAY : 5
(1) CREATE, REVIEW, AND REVISE A LIST OF DATA POINT S REQUIRED 6
AS PART OF MANDATED PARKINSON’S DISEASE REPORTING UNDER THIS SECTION , 7
INCLUDING NECESSARY TRIGGERING DIAGNOSTI C CONDITIONS THAT AR E 8
CONSISTENT WITH THE LATEST INTERNATIONAL STATISTICAL CLASSIFICATION OF 9
DISEASES AND RELATED HEALTH PROBLEMS; AND 10
(2) IMPLEMENT THE COLLECT ION OF DATA POINTS O N THE LIST 11
CREATED UNDER ITEM (1) OF THIS SUBSECTION T HROUGH A BULLETIN , OR SIMILAR 12
INSTRUCTION, TO NURSE PRACTITIONE RS, PHYSICIANS, AND PHYSICIAN 13
ASSISTANTS. 14
(E) AT LEAST 180 DAYS BEFOR E THE DEPARTMENT ADOPTS MAN DATORY 15
REPORTING OF PARKINSON’S DISEASE AND RELATE D PARKINSONISMS , THE 16
DEPARTMENT SHALL PROV IDE NOTIFICATION OF THE MANDATORY REPORT ING OF 17
PARKINSON’S DISEASE AND RELATE D PARKINSONISMS : 18
(1) ON THE DEPARTMENT ’S WEBSITE; 19
(2) DIRECTLY TO ASSOCIATI ONS REPRESENTING HOS PITALS, 20
HEALTH CARE PROFESSI ONALS, AND OTHER HEALTH CAR E PROVIDERS IN THE 21
STATE; AND 22
(3) DIRECTLY TO THE STATE BOARD OF NURSING AND THE STATE 23
BOARD OF PHYSICIANS. 24
(F) (1) A NURSE PRACTITIONER , PHYSICIAN, OR PHYSICIAN ASSISTANT 25
WHO DIAGNOSES PATIEN TS WITH PARKINSON’S DISEASE AND RELATE D 26
PARKINSONISMS SHALL REPORT EACH CASE OF PARKINSON’S DISEASE AND 27
RELATED PARKINSONISM S TO THE REGISTRY IN A FORMAT DETERMINED BY THE 28
DEPARTMENT . 29
(2) THE DEPARTMENT MAY USE EX ISTING REPORTING PROCED URES 30
TO IMPLEMENT THE REQ UIREMENT UNDER PARAG RAPH (1) OF THIS SUBSECTION 31
FOR DIAGNOSIS REPORT ING AND DATA SUBMISS ION BY A NURSE PRACT ITIONER, 32
PHYSICIAN, OR PHYSICIAN ASSISTA NT. 33
HOUSE BILL 703 7
18–1206. 1
(A) THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO PROVIDE DATA 2
COLLECTED IN THE REGISTRY WITH PARKINSON’S DISEASE REGISTRIES IN OTHER 3
STATES, FEDERAL PARKINSON’S DISEASE CONTROL AG ENCIES, LOCAL HEALTH 4
DEPARTMENTS , OR HEALTH RESEARCHER S FOR THE STUDY OF PARKINSON’S 5
DISEASE AND RELATED PARKINSONISMS . 6
(B) (1) BEFORE CONFIDENTIAL I NFORMATION IS DISCLO SED UNDER 7
SUBSECTION (A) OF THIS SECTION , THE DEPARTMENT SHALL RECE IVE A WRITTEN 8
AGREEMENT FROM THE P ARTNERING ENTITY TO MAINTAIN THE CONFIDE NTIALITY 9
OF THE INFORMATION . 10
(2) IF THE ENTITY RECEIVI NG CONFIDE NTIAL DATA FROM THE 11
REGISTRY IS A RESEARC H ENTITY, THE RESEARCH ENTITY SHALL: 12
(I) OBTAIN APPROVAL FROM THE COMMITTEE AT THE 13
RESEARCH ENTITY THAT NORMALLY REVIEWS RES EARCH PROJECTS FOR T HE 14
PROTECTION OF HUMAN SUBJECTS ESTABLISHED IN ACCORDANCE WITH TITLE 45 15
OF THE CODE OF FEDERAL REGULATIONS; AND 16
(II) PROVIDE DOCUMENTATION TO THE DEPARTMENT THAT 17
DEMONSTRATES , TO THE DEPARTMENT ’S SATISFACTION , THAT THE RESEARCH 18
ENTITY HAS ESTABLISH ED PROCEDURES AND TH E ABILITY TO MAINTAI N THE 19
CONFIDENTIALITY OF T HE DISCLOSED INFORMAT ION. 20
(C) THE DEPARTMENT SHALL ESTA BLISH PROCEDURES TO REVIEW AND 21
APPROVE REQUESTS TO USE REGISTRY DATA FOR SCI ENTIFIC RESEARCH . 22
18–1207. 23
(A) NOTWITHSTANDING ANY O THER PROVISION OF LA W OR RULE OF 24
PROCEDURE OR EVIDENC E IN THE MARYLAND RULES: 25
(1) A DATA DISCLOSURE AUTH ORIZED BY THIS SUBTI TLE MAY NOT: 26
(I) INCLUDE INFORMATION O THER THAN THE INFORM ATION 27
NECESSARY FOR THE PU RPOSE OF THE DISCLOS URE; 28
(II) BE USED FOR A PURPOSE OTHER THAN THE PURPO SE FOR 29
THE DISCLOSURE ; OR 30
(III) BE FURTHER DISCLOSED ; 31
8 HOUSE BILL 703
(2) THE CONFIDENTIAL INFO RMATION COLLECTED FO R THE 1
REGISTRY MAY NOT BE M ADE AVAILABLE FOR SU BPOENA, DISCLOSED, 2
DISCOVERABLE , OR COMPELLED TO BE P RODUCED IN ANY CIVIL , CRIMINAL, 3
ADMINISTRATIVE , OR OTHER PROCEEDING ; AND 4
(3) THE CONFIDENTIAL INFO RMATION COLLECTED FO R THE 5
REGISTRY MAY NOT BE D EEMED ADMISSIBLE AS EVIDENCE IN ANY CIVI L, CRIMINAL, 6
ADMINISTRATIVE , TRIBUNAL, OR OTHER PROCEEDING . 7
(B) (1) THIS SECTION DOES NOT PREEMPT THE AUTHORIT Y OF A HEALTH 8
CARE PROVIDER , AS DEFINED IN § 19–132 OF THIS ARTICLE , PROVIDING 9
DIAGNOSTIC SERVICES OR TREATMENT TO PATI ENTS WITH PARKINSON’S DISEASE 10
OR RELATED PARKINSON ISMS TO MAINTAIN A PARKINSON’S DISEASE REGISTRY . 11
(2) THIS SECTION DOES NOT PROHIBIT THE PUBLICA TION OF 12
REPORTS AND S TATISTICAL COMPILATI ONS THAT DO NOT IDEN TIFY INDIVIDUALS 13
WITH PARKINSON’S DISEASE OR RELATED PARKINSONISMS OR IND IVIDUAL 14
SOURCES OF INFORMATI ON. 15
18–1208. 16
(A) THE DEPARTMENT SHALL MAIN TAIN A RECORD OF IND IVIDUALS 17
GRANTED ACCESS TO CO NFIDENTIAL INFORMATION FROM THE REGISTRY. 18
(B) THE DEPARTMENT MAY NOT DE NY A REQUEST FOR INS PECTION OF THE 19
RECORD MAINTAINED UN DER SUBSECTION (A) OF THIS SECTION UNDE R TITLE 4 OF 20
THE GENERAL PROVISIONS ARTICLE. 21
(C) THE RECORD MAINTAINED UNDER SUBSECTION (A) OF THIS SECTION 22
SHALL INCLUDE THE AC CESSING INDIVIDUAL ’S: 23
(1) NAME; 24
(2) TITLE; 25
(3) ADDRESS; 26
(4) ORGANIZATIONAL AFFILI ATION; 27
(5) DATES OF ACCESS; AND 28
(6) PURPOSE FOR ACCESSING THE INFORMATION . 29
18–1209. 30 HOUSE BILL 703 9
THE DEPARTMENT SHALL ADOP T REGULATIONS NECESSARY TO CARRY O UT 1
THIS SUBTITLE. 2
18–1210. 3
(A) ON OR BEFORE DECEMBER 1 EACH YEAR, BEGINNING IN 2023, THE 4
ADVISORY COMMITTEE SHALL REPOR T TO THE SECRETARY OF HEALTH AND, IN 5
ACCORDANCE WITH § 2–1257 OF THE STATE GOVERNMENT ARTICLE, THE SENATE 6
FINANCE COMMITTEE AND THE HOUSE HEALTH AND GOVERNMENT OPERATIONS 7
COMMITTEE ON THE REGISTRY AND THE PREV ALENCE OF PARKINSON’S DISEASE IN 8
THE STATE. 9
(B) THE DEPARTMENT SHALL POST THE REPORT REQUIRED UNDER 10
SUBSECTION (A) OF THIS SECTION ON A DEDICATED WEBSITE ACCESSIBLE TO THE 11
PUBLIC. 12
18–1204. 13
(A) THE DEPARTMENT , IN COLLABORATION WIT H THE STATE–DESIGNATED 14
HEALTH INFORMATION E XCHANGE, SHALL ESTABLISH AND MAINTAIN A PUBLICLY 15
ACCESSIBLE WEBSITE T HAT HAS THE FOLLOWIN G INFORMATION IN A 16
DOWNLOADABLE FORMAT : 17
(1) THE INCIDENCE OF PARKINSON’S DISEASE IN THE STATE; AND 18
(2) TO THE EXTENT POSSIBL E, THE INCIDENCE OF PARKINSON’S 19
DISEASE DISAGGREGATE D BASED ON: 20
(I) AGE, INCLUDING AGE OF DIA GNOSIS; 21
(II) GENDER; 22
(III) SEX; 23
(IV) RACE; 24
(V) ETHNICITY; AND 25
(VI) CASES BY COUNTY . 26
(B) THE WEBSITE REQUIRED UNDER SUBSECTION (A) OF THIS SECTION 27
SHALL: 28
10 HOUSE BILL 703
(1) INCLUDE THE DATA AVAI LABLE FOR THE 5–YEAR PERIOD ENDING 1
ON SEPTEMBER 30, 2023; AND 2
(2) BE UPDATED ON OR BEFO RE JANUARY 1 EACH YEAR, TO INCLUDE 3
ANY NEWLY AVAILABLE DATA. 4
SECTION 2. AND BE IT FURTHER ENACTED, That on or before July 1, 2024, the 5
Parkinson’s Disease Registry Advisory Committee shall report to the Senate Finance 6
Committee and the House Health and Government Operations Committee, in accordance 7
with § 2–1257 of the State Government Article, on recommendations for a path forward 8
toward the establishment of a fully functional State Parkinson’s Disease Registry. 9
SECTION 3. AND BE IT FURTHER ENACTED, That the Maryland Department of 10
Health shall establish the website required under § 18–1204 of the Health – General 11
Article, as enacted by Section 1 of this Act, on or before October 1, 2023. 12
SECTION 2. 4. AND BE IT FURTHER ENACTED, That this Act shall take effect 13
October June 1, 2023. 14
Approved:
________________________________________________________________________________
Governor.
________________________________________________________________________________
Speaker of the House of Delegates.
________________________________________________________________________________
President of the Senate.