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HOUSE DOCKET, NO. 1479 FILED ON: 1/18/2023
HOUSE . . . . . . . . . . . . . . . No. 3614
The Commonwealth of Massachusetts
_________________
PRESENTED BY:
Edward F. Coppinger
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To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General
Court assembled:
The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill:
An Act to improve outcomes for individuals with Parkinson’s disease.
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PETITION OF:
NAME:DISTRICT/ADDRESS :DATE ADDED:Edward F. Coppinger10th Suffolk1/18/2023Adam Scanlon14th Bristol1/19/2023 1 of 7
HOUSE DOCKET, NO. 1479 FILED ON: 1/18/2023
HOUSE . . . . . . . . . . . . . . . No. 3614
By Representative Coppinger of Boston, a petition (accompanied by bill, House, No. 3614) of
Edward F. Coppinger and Adam Scanlon relative to the Parkinson’s disease registry and
improving outcomes for individuals with Parkinson’s disease. Public Health.
The Commonwealth of Massachusetts
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In the One Hundred and Ninety-Third General Court
(2023-2024)
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An Act to improve outcomes for individuals with Parkinson’s disease.
Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
of the same, as follows:
1 SECTION 1. Chapter 111 of the General Laws is hereby amended by striking Section
2243 and inserting in place thereof the following new section: -
3 Section 243: Parkinson’s disease registry
4 (a)As used in this section, the following words shall, unless the context clearly
5requires otherwise, have the following meanings:
6 “Parkinson’s disease”, a chronic and progressive neurologic disorder resulting from
7deficiency of the neurotransmitter dopamine as the consequence of specific degenerative changes
8in the area of the brain called the basal ganglia. It is characterized by tremor at rest, slow
9movements, muscle rigidity, stooped posture, and unsteady or shuffling gait.
10 “Parkinsonisms”, related conditions that causes a combination of the movement
11abnormalities seen in Parkinson's disease — such as tremor at rest, slow movement, muscle 2 of 7
12rigidity, impaired speech or muscle stiffness — which often overlap with and can evolve from
13what appears to be Parkinson’s disease. Example Parkinsonisms of particular interest include,
14but are not exclusive to, the following: Multiple System Atrophy (MSA), Dementia with Lewy
15Bodies (DLB), Corticobasal Degeneration (CBD), and Progressive Supranuclear Palsy (PSP).
16 (b)The department shall establish a Parkinson's disease registry for the collection of
17information necessary to determine the incidence and prevalence of Parkinson's disease and
18Parkinsonisms in the commonwealth.
19 (c)There shall be within the department a Parkinson's disease registry advisory
20committee to advise and assist in the development, implementation and progress of the
21Parkinson's disease registry established in subsection (a). The committee shall review and submit
22recommendations on: (i) what data shall be collected, including, but not limited to, demographic
23information and data by areas and regions of the commonwealth, with specific data from urban,
24low and median income communities and minority communities of the commonwealth; (ii) the
25means of collecting and disseminating such data; (iii) how to ensure privacy and confidentiality
26of such data; (iv) the purpose, design and functionality of the registry; and (v) the
27implementation of the registry. The committee shall recommend to the department any
28information deemed necessary and appropriate for the statistical identification and planning for
29treatment and education of health care providers and persons diagnosed with Parkinson's disease.
30 The committee shall consist of the commissioner, or a designee, and 10 members to be
31appointed by the commissioner as follows: 3 physicians, 1 of whom shall be a general
32neurologist, 1 of whom shall be a movement disorder specialist and 1 of whom shall be a
33primary care physician; 1 health informaticist; 2 population health researchers familiar with 3 of 7
34registries; 2 Parkinson's disease researchers; and 2 persons diagnosed with Parkinson's disease.
35The committee shall meet at least bi-annually to assess registry progress and recommend
36changes.
37 (d)The registry and system of collection and dissemination of information shall be
38under the direction of the commissioner, who may enter into contracts, grants or other
39agreements as are necessary for the conduct of the program.
40 (e)All patients diagnosed with Parkinson’s disease or related Parkinsonisms, as
41advised by an Advisory Committee, shall be provided a notice in writing and orally regarding the
42collection of information and patient data on Parkinson’s disease. Patients who do not wish to
43participate in the collection of data for purposes of research in this registry shall affirmatively
44opt-out in writing after an opportunity to review the documents and ask questions. No patient
45shall be forced to participate in this registry. Patients may change their participation status at any
46time by submitting a request in writing.
47 (f)The department shall establish a system for the collection and dissemination of
48information determining the incidence and prevalence of Parkinson’s disease and related
49Parkinsonisms, as advised by the advisory committee. The department shall designate
50Parkinson’s disease and related Parkinsonisms as advised by the advisory committee as diseases
51required to be reported in the state or any part of the state.
52 All cases of Parkinson’s disease diagnosed or treated in the commonwealth shall be
53reported to the department. However, the mere incidence of a patient with Parkinson’s shall be
54the sole required information for this registry for any patient who chooses not to participate. For 4 of 7
55the subset of patients who choose not to participate, no further data shall be reported to the
56registry.
57 The department may create, review and revise a list of data points required as part of
58mandated Parkinson’s disease reporting under this Section.
59 i. This list shall include, but not be limited to, necessary triggering diagnostic
60conditions, consistent with the latest International Statistical Classification of Diseases and
61Related Health Problems, and resulting case data including, but not limited to, diagnosis,
62treatment and survival.
63 ii.The department may implement and administer this subdivision through a
64bulletin, or similar instruction, to providers without taking regulatory action.
65 (g)The department shall provide notification of the mandatory reporting of
66Parkinson’s disease and Parkinsonism on its website and may also provide that information to
67professional associations representing physicians, nurse practitioners, and hospitals at least 90
68days prior to requiring information be reported.
69 (h)Any hospital, facility, physician, surgeon, physician assistant or nurse practitioner
70who diagnoses or is responsible for providing primary treatment to Parkinson’s disease or
71Parkinsonism patients shall report each case of Parkinson’s disease and Parkinsonisms, as
72required by subsection (e), to the department in a format prescribed by the department. The
73Department shall be authorized to enter into data sharing contracts with data reporting entities
74and their associated electronic medical record systems vendors to securely and confidentially
75receive information related to Parkinson’s disease testing, diagnosis and treatment. 5 of 7
76 (h) The department may enter into agreements to furnish data collected in this registry to
77other states’ Parkinson’s disease registries, federal Parkinson’s disease control agencies, local
78health officers, or health researchers for the study of Parkinson’s disease. Before confidential
79information is disclosed to those agencies, officers, researchers, or out-of-state registries, the
80requesting entity shall agree in writing to maintain the confidentiality of the information, and in
81the case of researchers, shall also do both of the following:
82 i. obtain approval of their committee for the protection of human subjects
83established in accordance with Part 46 (commencing with Section 46.101) of Title 45 of the
84Code of Federal Regulations; and
85 ii.provide documentation to the department that demonstrates to the department’s
86satisfaction that the entity has established the procedures and ability to maintain the
87confidentiality of the information.
88 (i) Except as otherwise provided in this section, all information collected pursuant to this
89section shall be confidential. For purposes of this section, this information shall be referred to as
90confidential information. To ensure privacy, the department shall promulgate a coding system
91that removes any identifying information about the patient.
92 (j) Notwithstanding any other law, a disclosure authorized by this section shall include
93only the information necessary for the stated purpose of the requested disclosure, used for the
94approved purpose, and not be further disclosed.
95 i. Provided the security of confidentiality has been documented, the furnishing of
96confidential information to the department or its authorized representative in accordance with 6 of 7
97this section shall not expose any person, agency or entity furnishing information to liability, and
98shall not be considered a waiver of any privilege or a violation of a confidential relationship.
99 (k) The department shall maintain an accurate record of all persons who are given access
100to confidential information. The record shall include: the name of the person authorizing access;
101name, title, address, and organizational affiliation of persons given access; dates of access; and
102the specific purpose for which information is to be used. The record of access shall be open to
103public inspection during normal operating hours of the department.
104 (l) Notwithstanding any other law, confidential information shall not be available for
105subpoena, shall not be disclosed, discoverable or compelled to be produced in any civil, criminal,
106administrative or other proceeding. Confidential information shall not be deemed admissible as
107evidence in any civil, criminal, administrative or other tribunal or court for any reason.
108 This subsection does not prohibit the publication by the department of reports and
109statistical compilations that do not in any way identify individual cases or individual sources of
110information.
111 Notwithstanding the restrictions in this subsection, the individual to whom the
112information pertains shall have access to his or her own information.
113 (m) This section does not preempt the authority of facilities or individuals providing
114diagnostic or treatment services to patients with Parkinson’s disease to maintain their own
115facility-based Parkinson’s disease registries.
116 SECTION 2. 7 of 7
117 On or before December 21, 2024, and every year thereafter, the Department shall report
118to the House Committee on Ways and Means, the Senate Committee on Ways and Means, and
119the Joint Committee on Public Health, a yearly program summary update on the incidents and
120prevalence of Parkinson’s in the state by county, how many records have been included and
121reported into the registry, and demographic information such as patients by age, gender and race.
122This yearly report shall also be published in a downloadable format on the Department’s
123webpage or designated Massachusetts Parkinson’s Research Registry webpage.
124 SECTION 3.
125 The Department shall create and maintain a webpage titled “an overview from the
126Massachusetts Parkinson’s Research Registry” within the Department’s public information
127website to allow public access to information related to the registry, a yearly program summary,
128and any other relevant or helpful information related to the registry as deemed necessary by the
129Parkinson’s Disease Registry Advisory Committee. This information may be published in any
130form deemed appropriate by the Department.
131 This section will take effect January 1, 2025.