Maryland 2023 Regular Session

Maryland House Bill HB703 Compare Versions

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33 EXPLANATION: CAPITALS INDICATE MAT TER ADDED TO EXISTIN G LAW.
44 [Brackets] indicate matter deleted from existing law.
5- Underlining indicates amendments to bill.
6- Strike out indicates matter stricken from the bill by amendment or deleted from the law by
7-amendment.
85 *hb0703*
96
107 HOUSE BILL 703
118 J1 3lr1884
129 CF SB 584
13-By: Delegate Kerr Delegates Kerr, Pena–Melnyk, Cullison, Alston, Bagnall,
14-Bhandari, Chisholm, Guzzone, Hill, Hutchinson, S. Johnson, Kaiser, Kipke,
15-R. Lewis, Lopez, Martinez, M. Morgan, Reilly, Rosenberg, Szeliga, Taveras,
16-White, and Woods
10+By: Delegate Kerr
1711 Introduced and read first time: February 6, 2023
1812 Assigned to: Health and Government Operations
19-Committee Report: Favorable with amendments
20-House action: Adopted
21-Read second time: March 21, 2023
2213
23-CHAPTER ______
14+A BILL ENTITLED
2415
2516 AN ACT concerning 1
2617
27-Public Health – Parkinson’s Disease Registry – Established Advisory Committee 2
28-and Website 3
18+Public Health – Parkinson’s Disease Registry – Established 2
2919
30-FOR the purpose of establishing a Parkinson’s Disease Registry in the Maryland 4
31-Department of Health; requiring the Department to collect certain data for the 5
32-Registry; authorizing the Department to share certain information in the Registry 6
33-with certain entities under certain conditions; providing for the confidentiality of 7
34-information collected under this Act; requiring the Department to maintain a record 8
35-of individuals granted access to confidential information in the Registry; altering the 9
36-duties of the Parkinson’s Disease Registry Advisory Committee; requiring the 10
37-Committee to meet on a certain basis beginning on a certain date, rather than with 11
38-the frequency established by the Secretary of Health; requiring the Maryland 12
39-Department of Health, in collaboration with the State –designated health 13
40-information exchange, to establish and maintain a certain website that has certain 14
41-information related to Parkinson’s disease; and generally relating to the 15
42-establishment of a Parkinson’s Disease Registry Parkinson’s disease. 16
20+FOR the purpose of establishing a Parkinson’s Disease Registry in the Maryland 3
21+Department of Health; requiring the Department to collect certain data for the 4
22+Registry; authorizing the Department to share certain information in the Registry 5
23+with certain entities under certain conditions; providing for the confidentiality of 6
24+information collected under this Act; requiring the Department to maintain a record 7
25+of individuals granted access to confidential information in the Registry; and 8
26+generally relating to the establishment of a Parkinson’s Disease Registry. 9
4327
44-BY repealing and reenacting, without amendments, 17
45- Article – Health – General 18
46-Section 18–1202 19
47- Annotated Code of Maryland 20
48- (2019 Replacement Volume and 2022 Supplement) 21 2 HOUSE BILL 703
28+BY repealing and reenacting, with amendments, 10
29+ Article – Health – General 11
30+Section 18–1201 and 18–1203 12
31+ Annotated Code of Maryland 13
32+ (2019 Replacement Volume and 2022 Supplement) 14
33+
34+BY repealing 15
35+ Article – Health – General 16
36+Section 18–1202 17
37+ Annotated Code of Maryland 18
38+ (2019 Replacement Volume and 2022 Supplement) 19
39+
40+BY adding to 20
41+ Article – Health – General 21
42+Section 18–1202 and 18–1204 through 18–1210 22
43+ Annotated Code of Maryland 23
44+ (2019 Replacement Volume and 2022 Supplement) 24
45+
46+ SECTION 1. BE IT ENACTED BY THE GENERAL ASSEMBLY OF MARYLAND, 25
47+That the Laws of Maryland read as follows: 26
48+ 2 HOUSE BILL 703
49+
50+
51+Article – Health – General 1
52+
53+18–1201. 2
54+
55+ (a) In this subtitle the following words have the meanings indicated. 3
56+
57+ (b) “Advisory Committee” means the Parkinson’s Disease Registry Advisory 4
58+Committee. 5
59+
60+ (c) (1) “PARKINSONISMS ” MEANS CONDITIONS RELATED TO 6
61+PARKINSON’S DISEASE THAT CAUSE A COMBINATION OF THE MOVEMENT 7
62+ABNORMALITIES SEEN I N PARKINSON’S DISEASE. 8
63+
64+ (2) “PARKINSONISMS ” INCLUDES MULTIPLE SYSTEM ATROPHY, 9
65+DEMENTIA WITH LEWY BODIES, CORTICOBASAL DEGENERATION , AND PROGRESSIVE 10
66+SUPRANUCLEAR PALSY. 11
67+
68+ (D) “Parkinson’s disease” means a chronic and progressive disorder resulting from 12
69+deficiency of the neurotransmitter dopamine as the consequence of specific degenerative 13
70+changes in the area of the brain called the basal ganglia, characterized by tremors at rest, 14
71+slow movements, muscle rigidity, stooped posture, and unsteady or shuffling gait. 15
72+
73+ (E) “REGISTRY” MEANS THE PARKINSON’S DISEASE REGISTRY. 16
74+
75+[18–1202. 17
76+
77+ There is a Parkinson’s Disease Registry Advisory Committee in the Department.] 18
78+
79+18–1202. 19
80+
81+ THERE IS A PARKINSON’S DISEASE REGISTRY IN THE DEPARTMENT . 20
82+
83+18–1203. 21
84+
85+ (A) THERE IS A PARKINSON’S DISEASE REGISTRY ADVISORY COMMITTEE 22
86+IN THE DEPARTMENT . 23
87+
88+ [(a)] (B) The Advisory Committee shall: 24
89+
90+ (1) Assist in the development and implementation of a Parkinson’s Disease 25
91+Registry; 26
92+
93+ (2) Determine what data shall be collected and be stored in a Parkinson’s 27
94+Disease Registry and the methods to ensure the privacy and confidentiality of data collected 28
95+and stored in the registry; and 29 HOUSE BILL 703 3
4996
5097
5198
52-BY repealing and reenacting, with amendments, 1
53- Article – Health – General 2
54-Section 18–1201 and 18–1203 3
55- Annotated Code of Maryland 4
56- (2019 Replacement Volume and 2022 Supplement) 5
99+ (3) Advise the Department on Parkinson’s disease and maintaining a 1
100+Parkinson’s Disease Registry. 2
57101
58-BY repealing 6
59- Article – Health – General 7
60-Section 18–1202 8
61- Annotated Code of Maryland 9
62- (2019 Replacement Volume and 2022 Supplement) 10
102+ [(b)] (C) (1) The Secretary shall appoint individuals to serve on the Advisory 3
103+Committee, including: 4
63104
64-BY adding to 11
65- Article – Health – General 12
66-Section 18–1202 and 18–1204 through 18–1210 13
67- Annotated Code of Maryland 14
68- (2019 Replacement Volume and 2022 Supplement) 15
105+ (i) A neurologist; 5
69106
70- SECTION 1. BE IT ENACTED BY THE GENERAL ASSEMBLY OF MARYLAND, 16
71-That the Laws of Maryland read as follows: 17
107+ (ii) A movement disorder specialist; 6
72108
73-Article – Health – General 18
109+ (iii) A primary care provider; 7
74110
75-18–1201. 19
111+ (iv) A physician informaticist; 8
76112
77- (a) In this subtitle the following words have the meanings indicated. 20
113+ (v) A patient with Parkinson’s disease; 9
78114
79- (b) “Advisory Committee” means the Parkinson’s Disease Registry Advisory 21
80-Committee. 22
115+ (vi) A public health professional; 10
81116
82- (c) (1) “PARKINSONISMS ” MEANS CONDITIONS REL ATED TO 23
83-PARKINSON’S DISEASE THAT CAUSE A COMBINATION OF THE MOVEMENT 24
84-ABNORMALITIES SEEN I N PARKINSON’S DISEASE. 25
117+ (vii) A population health researcher familiar with disease registries; 11
85118
86- (2) “PARKINSONISMS ” INCLUDES MULTIPLE SY STEM ATROPHY , 26
87-DEMENTIA WITH LEWY BODIES, CORTICOBASAL DEGENER ATION, AND PROGRESSIVE 27
88-SUPRANUCLEAR PALSY . 28
119+ (viii) A Parkinson’s disease researcher; and 12
89120
90- (D) “Parkinson’s disease” means a chronic and progressive disorder resulting from 29
91-deficiency of the neurotransmitter dopamine as the consequence of specific degenerative 30
92-changes in the area of the brain called the basal ganglia, characterized by tremors at rest, 31
93-slow movements, muscle rigidity, stooped posture, and unsteady or shuffling gait. 32
121+ (ix) Any other individuals the Secretary determines are necessary. 13
94122
95- (E) “REGISTRY” MEANS THE PARKINSON’S DISEASE REGISTRY. 33
96- HOUSE BILL 703 3
123+ (2) The Secretary shall establish: 14
97124
125+ (i) The duration of term limits for members of the Advisory 15
126+Committee; 16
98127
99-[18–1202. 1
128+ (ii) The frequency of meetings of the Advisory Committee; 17
100129
101- There is a Parkinson’s Disease Registry Advisory Committee in the Department.] 2
130+ (iii) Rules and procedures for conducting business of the Advisory 18
131+Committee; and 19
102132
103-18–1202. 3
133+ (iv) Any other rules necessary for the Advisory Committee to 20
134+function effectively. 21
104135
105- THERE IS A PARKINSON’S DISEASE REGISTRY IN THE DEPARTMENT . 4
136+18–1204. 22
106137
107-18–1203. 5
138+ (A) THE DEPARTMENT SHALL COLL ECT DATA FOR THE REGISTRY, 23
139+INCLUDING DATA ON THE IN CIDENCE OF PARKINSON’S DISEASE IN THE STATE AND 24
140+RELATED EPIDEMIOLOGI CAL DATA. 25
108141
109- (A) THERE IS A PARKINSON’S DISEASE REGISTRY ADVISORY COMMITTEE 6
110-IN THE DEPARTMENT . 7
111-
112- [(a)] (B) The Advisory Committee shall: 8
113-
114- (1) Assist in the development and implementation of a STATE Parkinson’s 9
115-Disease Registry; 10
116-
117- (2) Determine what data shall be collected and be stored in a STATE 11
118-Parkinson’s Disease Registry and the methods to ensure the privacy and confidentiality of 12
119-data collected and stored in the registry; and 13
120-
121- (3) Advise the Department on Parkinson’s disease and maintaining a 14
122-STATE Parkinson’s Disease Registry; AND 15
123-
124- (4) CONSULT WITH ENTITIES THAT MAY BE ABLE TO COLLECT DATA 16
125-AND WORK IN PARTNERS HIP WITH THE FEDERAL CENTERS FOR DISEASE CONTROL 17
126-AND PREVENTION TO AID THE FEDERAL CENTERS FOR DISEASE CONTROL AND 18
127-PREVENTION IN CREATIN G A NATIONAL PARKINSON’S DISEASE REGISTRY. 19
128-
129- (B) ENTITIES THAT MAY BE CONSULTED UNDER SUBS ECTION (A)(4) OF THIS 20
130-SECTION INCLUDE : 21
131-
132- (1) THE STATE–DESIGNATED HEALTH IN FORMATION EXCHANGE ; 22
133-
134- (2) NONPROFIT ORGANIZATIO NS; AND 23
135-
136- (3) COLLEGES OR UNIVERSIT IES. 24
137-
138- [(b)] (C) (1) The Secretary shall appoint individuals to serve on the Advisory 25
139-Committee, including: 26
140-
141- (i) A neurologist; 27
142-
143- (ii) A movement disorder specialist; 28 4 HOUSE BILL 703
142+ (B) THE ADVISORY COMMITTEE, IN CONSULTATION WITH THE 26
143+DEPARTMENT , SHALL: 27 4 HOUSE BILL 703
144144
145145
146146
147- (iii) A primary care provider; 1
147+ (1) IDENTIFY CATEGORIES OF DATA TO BE COLLECTED FOR THE 1
148+REGISTRY RELATED TO: 2
148149
149- (iv) A physician informaticist; 2
150+ (I) PATIENT DEMOGRAPHICS , INCLUDING GEOGRAPHY ; AND 3
150151
151- (v) A patient with Parkinson’s disease; 3
152+ (II) DIAGNOSES; AND 4
152153
153- (vi) A public health professional; 4
154+ (2) PERIODICALLY REVIEW T HE DATA COLLECTED FOR THE 5
155+REGISTRY TO ASSESS WHETHER THE : 6
154156
155- (vii) A population health researcher familiar with disease registries; 5
157+ (I) DATA INCLUDES SUFFICI ENT INFORMATION TO E NSURE 7
158+THERE ARE NO DUPLICA TED PATIENT RECORDS IN THE REGISTRY; AND 8
156159
157- (viii) A Parkinson’s disease researcher; and 6
160+ (II) CATEGORIES OF DATA CO LLECTED SHOULD BE AL TERED. 9
158161
159- (ix) Any other individuals the Secretary determines are necessary. 7
162+18–1205. 10
160163
161- (2) The Secretary shall establish: 8
164+ (A) (1) UNLESS OTHERWISE PROV IDED IN THIS SUBTITL E, ALL 11
165+INFORMATION COLLECTE D FOR THE REGISTRY UNDER THIS S UBTITLE SHALL BE 12
166+CONFIDENTIAL . 13
162167
163- (i) The duration of term limits for members of the Advisory 9
164-Committee; 10
168+ (2) THE DEPARTMENT SHALL IMPLEMENT A CODING S YSTEM THAT 14
169+REMOVES ANY PERSONAL LY IDENTIFIABLE INFO RMATION OF AN INDIVI DUAL FROM 15
170+COLLECTED DATA . 16
165171
166- (ii) The frequency of meetings of the Advisory Committee; 11
172+ (B) THE DEPARTMENT , IN CONSULTATION WITH THE ADVISORY 17
173+COMMITTEE, SHALL ESTABLISH A SY STEM FOR THE COLLECT ION OF DATA FOR THE 18
174+REGISTRY AND DISSEMINATION OF INFORMATION DETERMIN ING THE INCIDENCE 19
175+AND PREVALENCE OF PARKINSON’S DISEASE AND RELATE D PARKINSONISMS . 20
167176
168- (iii) Rules and procedures for conducting business of the Advisory 12
169-Committee; and 13
177+ (C) (1) THE DEPARTMENT , IN CONSULTATION WITH THE ADVISORY 21
178+COMMITTEE, SHALL: 22
170179
171- (iv) (III) Any other rules necessary for the Advisory Committee to 14
172-function effectively. 15
180+ (I) NOTIFY, IN WRITING AND ORALL Y, ALL INDIVIDUAL S IN THE 23
181+STATE DIAGNOSED WITH PARKINSON’S DISEASE OR RELATED PARKINSONISMS 24
182+ABOUT THE CREATION O F THE REGISTRY, DATA COLLECTION ASSO CIATED WITH 25
183+THE REGISTRY, AND THE RIGHT TO OPT OUT OF PARTICIPATION IN THE REGISTRY; 26
184+AND 27
173185
174- (D) BEGINNING JULY 1, 2023, THE ADVISORY COMMITTEE SHALL MEET AT 16
175-LEAST QUARTERLY . 17
186+ (II) PROVIDE AN OPPORTUNIT Y TO OPT OUT OF PARTICIPAT ION 28
187+IN THE REGISTRY. 29
188+ HOUSE BILL 703 5
176189
177-18–1204. 18
178190
179- (A) THE DEPARTMENT SHALL COLL ECT DATA FOR THE REGISTRY, 19
180-INCLUDING DATA ON THE INC IDENCE OF PARKINSON’S DISEASE IN THE STATE AND 20
181-RELATED EPIDEMIOLOGI CAL DATA. 21
191+ (2) (I) AN INDIVIDUAL WITH PARKINSON’S DISEASE OR RELATED 1
192+PARKINSONISMS MAY OPT OUT OF PARTI CIPATING IN THE REGISTRY BY 2
193+SUBMITTING WRITTEN N OTICE TO THE DEPARTMENT . 3
182194
183- (B) THE ADVISORY COMMITTEE, IN CONSULTATION WITH THE 22
184-DEPARTMENT , SHALL: 23
195+ (II) IF AN INDIVIDUAL OPTS OUT OF PARTICIPA TION IN THE 4
196+REGISTRY, THE DEPARTMENT : 5
185197
186- (1) IDENTIFY CATEGORIES O F DATA TO BE COLLECT ED FOR THE 24
187-REGISTRY RELATED TO : 25
198+ 1. SHALL RECORD AN INCID ENCE OF A PATIENT WI TH 6
199+PARKINSON’S DISEASE; AND 7
188200
189- (I) PATIENT DEMOGRAPHICS , INCLUDING GEOGRAPHY ; AND 26
201+ 2. MAY NOT RECORD ANY AD DITIONAL INFORMATION 8
202+ABOUT THE INDIVIDUAL . 9
190203
191- (II) DIAGNOSES; AND 27 HOUSE BILL 703 5
204+ (D) THE DEPARTMENT MAY : 10
205+
206+ (1) CREATE, REVIEW, AND REVISE A LIST OF DATA POINTS REQUIRED 11
207+AS PART OF MANDATED PARKINSON’S DISEASE REPORTING UNDER THIS SECTION , 12
208+INCLUDING NECESSARY TRIGGERING DIAGNOSTI C CONDITIONS THAT AR E 13
209+CONSISTENT WITH THE LATEST INTERNATIONAL STATISTICAL CLASSIFICATION OF 14
210+DISEASES AND RELATED HEALTH PROBLEMS; AND 15
211+
212+ (2) IMPLEMENT THE COLLECT ION OF DATA POINTS O N THE LIST 16
213+CREATED UNDER ITEM (1) OF THIS SUBSECTION T HROUGH A BULLETIN , OR SIMILAR 17
214+INSTRUCTION, TO NURSE PRACTITIONE RS, PHYSICIANS, AND PHYSICIAN 18
215+ASSISTANTS. 19
216+
217+ (E) AT LEAST 180 DAYS BEFORE THE DEPARTMENT ADOPTS MANDA TORY 20
218+REPORTING OF PARKINSON’S DISEASE AND RELATE D PARKINSONISMS , THE 21
219+DEPARTMENT SHALL PROV IDE NOTIFICATION OF THE MANDATORY REPORT ING OF 22
220+PARKINSON’S DISEASE AND RELATE D PARKINSONISMS : 23
221+
222+ (1) ON THE DEPARTMENT ’S WEBSITE; 24
223+
224+ (2) DIRECTLY TO ASSOCIATIONS REPR ESENTING HOSPITALS , 25
225+HEALTH CARE PROFESSI ONALS, AND OTHER HEALTH CAR E PROVIDERS IN THE 26
226+STATE; AND 27
227+
228+ (3) DIRECTLY TO THE STATE BOARD OF NURSING AND THE STATE 28
229+BOARD OF PHYSICIANS. 29
230+
231+ (F) (1) A NURSE PRACTITIONER , PHYSICIAN, OR PHYSICIAN AS SISTANT 30
232+WHO DIAGNOSES PATIEN TS WITH PARKINSON’S DISEASE AND RELATE D 31
233+PARKINSONISMS SHALL REPORT EACH CASE OF PARKINSON’S DISEASE AND 32 6 HOUSE BILL 703
234+
235+
236+RELATED PARKINSONISM S TO THE REGISTRY IN A FORMAT DETERMINED BY THE 1
237+DEPARTMENT . 2
238+
239+ (2) THE DEPARTMENT MAY U SE EXISTING REPORTING PROCEDURES 3
240+TO IMPLEMENT THE REQ UIREMENT UNDER PARAG RAPH (1) OF THIS SUBSECTION 4
241+FOR DIAGNOSIS REPORT ING AND DATA SUBMISS ION BY A NURSE PRACTITIONER , 5
242+PHYSICIAN, OR PHYSICIAN ASSISTA NT. 6
243+
244+18–1206. 7
245+
246+ (A) THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO P ROVIDE DATA 8
247+COLLECTED IN THE REGISTRY WITH PARKINSON’S DISEASE REGISTRIES IN OTHER 9
248+STATES, FEDERAL PARKINSON’S DISEASE CONTROL AG ENCIES, LOCAL HEALTH 10
249+DEPARTMENTS , OR HEALTH RESEARCHER S FOR THE STUDY OF PARKINSON’S 11
250+DISEASE AND RELATED PARKINSONISMS . 12
251+
252+ (B) (1) BEFORE CONFIDENTIAL I NFORMATION IS DISCLO SED UNDER 13
253+SUBSECTION (A) OF THIS SECTION , THE DEPARTMENT SHALL RECE IVE A WRITTEN 14
254+AGREEMENT FROM THE P ARTNERING ENTITY TO MAINTAIN THE CONFIDE NTIALITY 15
255+OF THE INFORMATION . 16
256+
257+ (2) IF THE ENTITY RECEIVI NG CONFIDENTIAL DATA FROM THE 17
258+REGISTRY IS A RESEARC H ENTITY, THE RESEARCH ENTITY SHALL: 18
259+
260+ (I) OBTAIN APPROVAL FROM THE COMMITTEE AT THE 19
261+RESEARCH ENTITY THAT NORMALLY REVIEW S RESEARCH PROJECTS FOR THE 20
262+PROTECTION OF HUMAN SUBJECTS ESTABLISHED IN ACCORDANCE WITH TITLE 45 21
263+OF THE CODE OF FEDERAL REGULATIONS; AND 22
264+
265+ (II) PROVIDE DOCUMENTATION TO THE DEPARTMENT THAT 23
266+DEMONSTRATES , TO THE DEPARTMENT ’S SATISFACTION , THAT THE RESEARCH 24
267+ENTITY HAS ESTABLISH ED PROCEDURES AND TH E ABILITY TO MAINTAI N THE 25
268+CONFIDENTIALITY OF T HE DISCLOSED INFORMATION . 26
269+
270+ (C) THE DEPARTMENT SHALL ESTA BLISH PROCEDURES TO REVIEW AND 27
271+APPROVE REQUESTS TO USE REGISTRY DATA FOR SCI ENTIFIC RESEARCH . 28
272+
273+18–1207. 29
274+
275+ (A) NOTWITHSTANDING ANY O THER PROVISION OF LA W OR RULE OF 30
276+PROCEDURE OR EVIDENC E IN THE MARYLAND RULES: 31
277+
278+ (1) A DATA DISCLOSURE AUTH ORIZED BY THIS SUBTI TLE MAY NOT: 32 HOUSE BILL 703 7
192279
193280
194281
195- (2) PERIODICALLY REVIEW T HE DATA COLLECTED FO R THE 1
196-REGISTRY TO ASSESS WH ETHER THE: 2
282+ (I) INCLUDE INFORMATION O THER THAN THE INFORM ATION 1
283+NECESSARY FOR THE PU RPOSE OF THE DISCLOS URE; 2
197284
198- (I) DATA INCLUDES SUFFICI ENT INFORMATION TO E NSURE 3
199-THERE ARE NO DUPLICA TED PATIENT RECORDS IN THE REGISTRY; AND 4
285+ (II) BE USED FOR A PURPOSE OTHER THAN THE PURPO SE FOR 3
286+THE DISCLOSURE ; OR 4
200287
201- (II) CATEGORIES OF DATA CO LLECTED SHOULD BE AL TERED. 5
288+ (III) BE FURTHER DISCLOSED ; 5
202289
203-18–1205. 6
290+ (2) THE CONFIDENTIAL INFO RMATION COLLECTED FO R THE 6
291+REGISTRY MAY NOT BE M ADE AVAILABLE FOR SU BPOENA, DISCLOSED, 7
292+DISCOVERABLE , OR COMPELLED TO BE P RODUCED IN ANY CIVIL , CRIMINAL, 8
293+ADMINISTRATIVE , OR OTHER PROCEEDING ; AND 9
204294
205- (A) (1) UNLESS OTHERWISE PROV IDED IN THIS SUBTITL E, ALL 7
206-INFORMATION COLLECTE D FOR THE REGISTRY UNDER THIS S UBTITLE SHALL BE 8
207-CONFIDENTIAL . 9
295+ (3) THE CONFIDENT IAL INFORMATION COLL ECTED FOR THE 10
296+REGISTRY MAY NOT BE D EEMED ADMISSIBLE AS EVIDENCE IN ANY CIVI L, CRIMINAL, 11
297+ADMINISTRATIVE , TRIBUNAL, OR OTHER PROCEEDING . 12
208298
209- (2) THE DEPARTMENT SHALL IMPLEMENT A CODING S YSTEM THAT 10
210-REMOVES ANY PERSONAL LY IDENTIFIABLE INFO RMATION OF AN INDIVI DUAL FROM 11
211-COLLECTED DATA . 12
299+ (B) (1) THIS SECTION DOES NOT PREEMPT THE AUTHORIT Y OF A HEALTH 13
300+CARE PROVIDER , AS DEFINED IN § 19–132 OF THIS ARTICLE , PROVIDING 14
301+DIAGNOSTIC SERVICES OR TREATMENT TO PATI ENTS WITH PARKINSON’S DISEASE 15
302+OR RELATED PARKINSON ISMS TO MAINTAIN A PARKINSON’S DISEASE REGISTR Y. 16
212303
213- (B) THE DEPARTMENT , IN CONSULTATION WITH THE ADVISORY 13
214-COMMITTEE, SHALL ESTABLISH A SY STEM FOR THE COLLECT ION OF DATA FOR THE 14
215-REGISTRY AND DISSEMINATION OF INF ORMATION DETERMINING THE INCIDENCE 15
216-AND PREVALENCE OF PARKINSON’S DISEASE AND RELATE D PARKINSONISMS . 16
304+ (2) THIS SECTION DOES NOT PROHIBIT THE PUBLICA TION OF 17
305+REPORTS AND STATISTI CAL COMPIL ATIONS THAT DO NOT I DENTIFY INDIVIDUALS 18
306+WITH PARKINSON’S DISEASE OR RELATED PARKINSONISMS OR IND IVIDUAL 19
307+SOURCES OF INFORMATI ON. 20
217308
218- (C) (1) THE DEPARTMENT , IN CONSULTATION WITH THE ADVISORY 17
219-COMMITTEE, SHALL: 18
309+18–1208. 21
220310
221- (I) NOTIFY, IN WRITING AND ORALL Y, ALL INDIVIDUALS I N THE 19
222-STATE DIAGNOSED WITH PARKINSON’S DISEASE OR RELATED PARKINSONISMS 20
223-ABOUT THE CREATION O F THE REGISTRY, DATA COLLECTION ASSO CIATED WITH 21
224-THE REGISTRY, AND THE RIGHT TO OPT OUT OF PARTICIPATION IN THE REGISTRY; 22
225-AND 23
311+ (A) THE DEPARTMENT SHALL MAINTAIN A RECORD OF INDIVIDUALS 22
312+GRANTED ACCESS TO CO NFIDENTIAL INFORMATI ON FROM THE REGISTRY. 23
226313
227- (II) PROVIDE AN OPPORTUNIT Y TO OPT OUT OF PARTICIPATION 24
228-IN THE REGISTRY. 25
314+ (B) THE DEPARTMENT MAY NOT DE NY A REQUEST FOR INS PECTION OF THE 24
315+RECORD MAINTAINED UN DER SUBSECTION (A) OF THIS SECTION UNDER TITLE 4 OF 25
316+THE GENERAL PROVISIONS ARTICLE. 26
229317
230- (2) (I) AN INDIVIDUAL WITH PARKINSON’S DISEASE OR RELATED 26
231-PARKINSONISMS MAY OP T OUT OF PARTICIPATI NG IN THE REGISTRY BY 27
232-SUBMITTING WRITTEN N OTICE TO THE DEPARTMENT . 28
318+ (C) THE RECORD MAINTAINED UNDER SUBSECTION (A) OF THIS SECTION 27
319+SHALL INCLUDE THE ACCESSING INDIVI DUAL’S: 28
233320
234- (II) IF AN INDIVIDUAL OPTS OUT OF PARTICIPATION IN THE 29
235-REGISTRY, THE DEPARTMENT : 30
236- 6 HOUSE BILL 703
321+ (1) NAME; 29
237322
238-
239- 1. SHALL RECORD AN INCID ENCE OF A PATIENT WI TH 1
240-PARKINSON’S DISEASE; AND 2
241-
242- 2. MAY NOT RECORD ANY AD DITIONAL INFORMATION 3
243-ABOUT THE INDIVIDUAL . 4
244-
245- (D) THE DEPARTMENT MAY : 5
246-
247- (1) CREATE, REVIEW, AND REVISE A LIST OF DATA POINT S REQUIRED 6
248-AS PART OF MANDATED PARKINSON’S DISEASE REPORTING UNDER THIS SECTION , 7
249-INCLUDING NECESSARY TRIGGERING DIAGNOSTI C CONDITIONS THAT AR E 8
250-CONSISTENT WITH THE LATEST INTERNATIONAL STATISTICAL CLASSIFICATION OF 9
251-DISEASES AND RELATED HEALTH PROBLEMS; AND 10
252-
253- (2) IMPLEMENT THE COLLECT ION OF DATA POINTS O N THE LIST 11
254-CREATED UNDER ITEM (1) OF THIS SUBSECTION T HROUGH A BULLETIN , OR SIMILAR 12
255-INSTRUCTION, TO NURSE PRACTITIONE RS, PHYSICIANS, AND PHYSICIAN 13
256-ASSISTANTS. 14
257-
258- (E) AT LEAST 180 DAYS BEFOR E THE DEPARTMENT ADOPTS MAN DATORY 15
259-REPORTING OF PARKINSON’S DISEASE AND RELATE D PARKINSONISMS , THE 16
260-DEPARTMENT SHALL PROV IDE NOTIFICATION OF THE MANDATORY REPORT ING OF 17
261-PARKINSON’S DISEASE AND RELATE D PARKINSONISMS : 18
262-
263- (1) ON THE DEPARTMENT ’S WEBSITE; 19
264-
265- (2) DIRECTLY TO ASSOCIATI ONS REPRESENTING HOS PITALS, 20
266-HEALTH CARE PROFESSI ONALS, AND OTHER HEALTH CAR E PROVIDERS IN THE 21
267-STATE; AND 22
268-
269- (3) DIRECTLY TO THE STATE BOARD OF NURSING AND THE STATE 23
270-BOARD OF PHYSICIANS. 24
271-
272- (F) (1) A NURSE PRACTITIONER , PHYSICIAN, OR PHYSICIAN ASSISTANT 25
273-WHO DIAGNOSES PATIEN TS WITH PARKINSON’S DISEASE AND RELATE D 26
274-PARKINSONISMS SHALL REPORT EACH CASE OF PARKINSON’S DISEASE AND 27
275-RELATED PARKINSONISM S TO THE REGISTRY IN A FORMAT DETERMINED BY THE 28
276-DEPARTMENT . 29
277-
278- (2) THE DEPARTMENT MAY USE EX ISTING REPORTING PROCED URES 30
279-TO IMPLEMENT THE REQ UIREMENT UNDER PARAG RAPH (1) OF THIS SUBSECTION 31
280-FOR DIAGNOSIS REPORT ING AND DATA SUBMISS ION BY A NURSE PRACT ITIONER, 32
281-PHYSICIAN, OR PHYSICIAN ASSISTA NT. 33
282- HOUSE BILL 703 7
283-
284-
285-18–1206. 1
286-
287- (A) THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO PROVIDE DATA 2
288-COLLECTED IN THE REGISTRY WITH PARKINSON’S DISEASE REGISTRIES IN OTHER 3
289-STATES, FEDERAL PARKINSON’S DISEASE CONTROL AG ENCIES, LOCAL HEALTH 4
290-DEPARTMENTS , OR HEALTH RESEARCHER S FOR THE STUDY OF PARKINSON’S 5
291-DISEASE AND RELATED PARKINSONISMS . 6
292-
293- (B) (1) BEFORE CONFIDENTIAL I NFORMATION IS DISCLO SED UNDER 7
294-SUBSECTION (A) OF THIS SECTION , THE DEPARTMENT SHALL RECE IVE A WRITTEN 8
295-AGREEMENT FROM THE P ARTNERING ENTITY TO MAINTAIN THE CONFIDE NTIALITY 9
296-OF THE INFORMATION . 10
297-
298- (2) IF THE ENTITY RECEIVI NG CONFIDE NTIAL DATA FROM THE 11
299-REGISTRY IS A RESEARC H ENTITY, THE RESEARCH ENTITY SHALL: 12
300-
301- (I) OBTAIN APPROVAL FROM THE COMMITTEE AT THE 13
302-RESEARCH ENTITY THAT NORMALLY REVIEWS RES EARCH PROJECTS FOR T HE 14
303-PROTECTION OF HUMAN SUBJECTS ESTABLISHED IN ACCORDANCE WITH TITLE 45 15
304-OF THE CODE OF FEDERAL REGULATIONS; AND 16
305-
306- (II) PROVIDE DOCUMENTATION TO THE DEPARTMENT THAT 17
307-DEMONSTRATES , TO THE DEPARTMENT ’S SATISFACTION , THAT THE RESEARCH 18
308-ENTITY HAS ESTABLISH ED PROCEDURES AND TH E ABILITY TO MAINTAI N THE 19
309-CONFIDENTIALITY OF T HE DISCLOSED INFORMAT ION. 20
310-
311- (C) THE DEPARTMENT SHALL ESTA BLISH PROCEDURES TO REVIEW AND 21
312-APPROVE REQUESTS TO USE REGISTRY DATA FOR SCI ENTIFIC RESEARCH . 22
313-
314-18–1207. 23
315-
316- (A) NOTWITHSTANDING ANY O THER PROVISION OF LA W OR RULE OF 24
317-PROCEDURE OR EVIDENC E IN THE MARYLAND RULES: 25
318-
319- (1) A DATA DISCLOSURE AUTH ORIZED BY THIS SUBTI TLE MAY NOT: 26
320-
321- (I) INCLUDE INFORMATION O THER THAN THE INFORM ATION 27
322-NECESSARY FOR THE PU RPOSE OF THE DISCLOS URE; 28
323-
324- (II) BE USED FOR A PURPOSE OTHER THAN THE PURPO SE FOR 29
325-THE DISCLOSURE ; OR 30
326-
327- (III) BE FURTHER DISCLOSED ; 31
328- 8 HOUSE BILL 703
329-
330-
331- (2) THE CONFIDENTIAL INFO RMATION COLLECTED FO R THE 1
332-REGISTRY MAY NOT BE M ADE AVAILABLE FOR SU BPOENA, DISCLOSED, 2
333-DISCOVERABLE , OR COMPELLED TO BE P RODUCED IN ANY CIVIL , CRIMINAL, 3
334-ADMINISTRATIVE , OR OTHER PROCEEDING ; AND 4
335-
336- (3) THE CONFIDENTIAL INFO RMATION COLLECTED FO R THE 5
337-REGISTRY MAY NOT BE D EEMED ADMISSIBLE AS EVIDENCE IN ANY CIVI L, CRIMINAL, 6
338-ADMINISTRATIVE , TRIBUNAL, OR OTHER PROCEEDING . 7
339-
340- (B) (1) THIS SECTION DOES NOT PREEMPT THE AUTHORIT Y OF A HEALTH 8
341-CARE PROVIDER , AS DEFINED IN § 19–132 OF THIS ARTICLE , PROVIDING 9
342-DIAGNOSTIC SERVICES OR TREATMENT TO PATI ENTS WITH PARKINSON’S DISEASE 10
343-OR RELATED PARKINSON ISMS TO MAINTAIN A PARKINSON’S DISEASE REGISTRY . 11
344-
345- (2) THIS SECTION DOES NOT PROHIBIT THE PUBLICA TION OF 12
346-REPORTS AND S TATISTICAL COMPILATI ONS THAT DO NOT IDEN TIFY INDIVIDUALS 13
347-WITH PARKINSON’S DISEASE OR RELATED PARKINSONISMS OR IND IVIDUAL 14
348-SOURCES OF INFORMATI ON. 15
349-
350-18–1208. 16
351-
352- (A) THE DEPARTMENT SHALL MAIN TAIN A RECORD OF IND IVIDUALS 17
353-GRANTED ACCESS TO CO NFIDENTIAL INFORMATION FROM THE REGISTRY. 18
354-
355- (B) THE DEPARTMENT MAY NOT DE NY A REQUEST FOR INS PECTION OF THE 19
356-RECORD MAINTAINED UN DER SUBSECTION (A) OF THIS SECTION UNDE R TITLE 4 OF 20
357-THE GENERAL PROVISIONS ARTICLE. 21
358-
359- (C) THE RECORD MAINTAINED UNDER SUBSECTION (A) OF THIS SECTION 22
360-SHALL INCLUDE THE AC CESSING INDIVIDUAL ’S: 23
361-
362- (1) NAME; 24
363-
364- (2) TITLE; 25
365-
366- (3) ADDRESS; 26
367-
368- (4) ORGANIZATIONAL AFFILI ATION; 27
369-
370- (5) DATES OF ACCESS; AND 28
371-
372- (6) PURPOSE FOR ACCESSING THE INFORMATION . 29
373-
374-18–1209. 30 HOUSE BILL 703 9
323+ (2) TITLE; 30 8 HOUSE BILL 703
375324
376325
377326
378- THE DEPARTMENT SHALL ADOP T REGULATIONS NECESSARY TO CARRY O UT 1
379-THIS SUBTITLE. 2
327+ (3) ADDRESS; 1
380328
381-18–1210. 3
329+ (4) ORGANIZATIONAL AFFILI ATION; 2
382330
383- (A) ON OR BEFORE DECEMBER 1 EACH YEAR, BEGINNING IN 2023, THE 4
384-ADVISORY COMMITTEE SHALL REPOR T TO THE SECRETARY OF HEALTH AND, IN 5
385-ACCORDANCE WITH § 2–1257 OF THE STATE GOVERNMENT ARTICLE, THE SENATE 6
386-FINANCE COMMITTEE AND THE HOUSE HEALTH AND GOVERNMENT OPERATIONS 7
387-COMMITTEE ON THE REGISTRY AND THE PREV ALENCE OF PARKINSON’S DISEASE IN 8
388-THE STATE. 9
331+ (5) DATES OF ACCESS; AND 3
389332
390- (B) THE DEPARTMENT SHALL POST THE REPORT REQUIRED UNDER 10
391-SUBSECTION (A) OF THIS SECTION ON A DEDICATED WEBSITE ACCESSIBLE TO THE 11
392-PUBLIC. 12
333+ (6) PURPOSE FOR ACCESSING THE INFORMATION . 4
393334
394-18–1204. 13
335+18–1209. 5
395336
396- (A) THE DEPARTMENT , IN COLLABORATION WIT H THE STATE–DESIGNATED 14
397-HEALTH INFORMATION E XCHANGE, SHALL ESTABLISH AND MAINTAIN A PUBLICLY 15
398-ACCESSIBLE WEBSITE T HAT HAS THE FOLLOWIN G INFORMATION IN A 16
399-DOWNLOADABLE FORMAT : 17
337+ THE DEPARTMENT SHALL ADOP T REGULATIONS NECESS ARY TO CARRY OUT 6
338+THIS SUBTITLE. 7
400339
401- (1) THE INCIDENCE OF PARKINSON’S DISEASE IN THE STATE; AND 18
340+18–1210. 8
402341
403- (2) TO THE EXTENT POSSIBL E, THE INCIDENCE OF PARKINSON’S 19
404-DISEASE DISAGGREGATE D BASED ON: 20
342+ (A) ON OR BEFORE DECEMBER 1 EACH YEAR, BEGINNING IN 2023, THE 9
343+ADVISORY COMMITTEE SHALL REPOR T TO THE SECRETARY OF HEALTH AND, IN 10
344+ACCORDANCE WITH § 2–1257 OF THE STATE GOVERNMENT ARTICLE, THE SENATE 11
345+FINANCE COMMITTEE AND THE HOUSE HEALTH AND GOVERNMENT OPERATIONS 12
346+COMMITTEE ON THE REGISTRY AND THE PREV ALENCE OF PARKINSON’S DISEASE IN 13
347+THE STATE. 14
405348
406- (I) AGE, INCLUDING AGE OF DIA GNOSIS; 21
349+ (B) THE DEPARTMENT SHALL POST THE REPORT REQUIRED UNDER 15
350+SUBSECTION (A) OF THIS SECTION ON A DEDICATED WEBSITE AC CESSIBLE TO THE 16
351+PUBLIC. 17
407352
408- (II) GENDER; 22
353+ SECTION 2. AND BE IT FURTHER ENACTED, That this Act shall take effect 18
354+October 1, 2023. 19
409355
410- (III) SEX; 23
411-
412- (IV) RACE; 24
413-
414- (V) ETHNICITY; AND 25
415-
416- (VI) CASES BY COUNTY . 26
417-
418- (B) THE WEBSITE REQUIRED UNDER SUBSECTION (A) OF THIS SECTION 27
419-SHALL: 28
420- 10 HOUSE BILL 703
421-
422-
423- (1) INCLUDE THE DATA AVAI LABLE FOR THE 5–YEAR PERIOD ENDING 1
424-ON SEPTEMBER 30, 2023; AND 2
425-
426- (2) BE UPDATED ON OR BEFO RE JANUARY 1 EACH YEAR, TO INCLUDE 3
427-ANY NEWLY AVAILABLE DATA. 4
428-
429- SECTION 2. AND BE IT FURTHER ENACTED, That on or before July 1, 2024, the 5
430-Parkinson’s Disease Registry Advisory Committee shall report to the Senate Finance 6
431-Committee and the House Health and Government Operations Committee, in accordance 7
432-with § 2–1257 of the State Government Article, on recommendations for a path forward 8
433-toward the establishment of a fully functional State Parkinson’s Disease Registry. 9
434-
435- SECTION 3. AND BE IT FURTHER ENACTED, That the Maryland Department of 10
436-Health shall establish the website required under § 18–1204 of the Health – General 11
437-Article, as enacted by Section 1 of this Act, on or before October 1, 2023. 12
438-
439- SECTION 2. 4. AND BE IT FURTHER ENACTED, That this Act shall take effect 13
440-October June 1, 2023. 14
441-
442-
443-
444-
445-Approved:
446-________________________________________________________________________________
447- Governor.
448-________________________________________________________________________________
449- Speaker of the House of Delegates.
450-________________________________________________________________________________
451- President of the Senate.