Gunther, McDonald, Fahy, Stern, Kim, Hyndman, Woerner, Shimsky, Carroll, Dickens, McMahon, Simon,
McDonough, Ra, De Los Santos, Stirpe, Buttenschon, Sillitti, Seawright, Thiele, Levenberg, Hevesi,
Manktelow, Brabenec, Jensen, DeStefano, Sayegh, Santabarbara
MLTSPNSR
Add Art 20-B §§2010 - 2014, Pub Health L
Establishes a state Parkinson's disease registry; directs certain health professionals and general hospitals to report instances of Parkinson's disease and Parkinsonisms to the department of health; directs the department of health to create and manage the Parkinson's disease registry; makes related provisions.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A5803B
SPONSOR: Paulin TITLE OF BILL:
An act to amend the public health law, in relation to establishing a
state Parkinson's disease registry
PURPOSE OR GENERAL IDEA OF BILL:
To ensure the collection of accurate, reliable data in order to enhance
delivery of state services to individuals with Parkinson's, identify
high-risk groups, support patient contact studies, serve as a valuable
data resource to prevent and optimally manage Parkinson's disease,
assist in determining incidence and prevalence of PD more accurately,
help researchers study patterns of PD over time, and ultimately help
researchers identify a cure-for PD.
SUMMARY OF SPECIFIC PROVISIONS:
Section 1 of the bill provides definitions, establishes a duty to report
cases of Parkinson's disease for healthcare practitioners, provides for
the informed consent of patients and enables patients to opt-out of the
registry, provides for the creation of a Parkinson's disease registry
and establishes which experts the department may consult with for the
development and implementation of this registry, provides data storing,
reporting, and sharing requirements for the department of health, and
authorizes the Commissioner of Health to make regulations to implement
these provisions.
Section 2 of the bill provides the effective date.
JUSTIFICATION:
Parkinson's disease (PD) is the fastest-growing neurological disorder,
with prevalence of PD having doubled in the past 25 years. The experi-
ence of living with Parkinson's is unique to each person. Many can live
full and productive lives with the disease, but the diagnosis does have
a ripple effect. As the disease progresses, everyday things many take
for granted-like buying groceries, working a 9-5 job, going up and down
stairs, or changing a light bulb-become increasingly more difficult.
Current estimates show that over one million people live with
Parkinson's disease in the United States, a figure that may be severely
undercounted. A staggering $52 billion is spent annually in the United
States on Parkinson's, with costs expected to increase to upwards of $80
billion annually by 2037. The continued need for additional funding for
treatments and ultimately a cure for PD is critical, and that cannot be
attained without accurate, reliable data.
The United States does not have a Parkinson's disease registry. Several
states have established their own registries, which collect state-spe-
cific data on people living with Parkinson's. The first registry was
established in Nebraska in 1996, and there have since been registries
created in California, Utah, Washington, and in 2022, South Carolina and
West Virginia. Both Maryland and Massachusetts have created Advisory
Committees that have recommended the establishment of a registry.
A Parkinson's disease registry will enable New York State to better
support people living with Parkinson's. This registry will help identify
high-risk groups, support patient contact studies, and serve as a valu-
able data resource to prevent and optimally manage Parkinson's disease.
Additionally, the registry will assist in determining incidence and
prevalence of PD more accurately and help researchers study patterns of
PD over time.
BILL HISTORY:
New bill.
FISCAL IMPLICATIONS:
To be determined.
EFFECTIVE DATE:
This act shall take effect immediately.
STATE OF NEW YORK
________________________________________________________________________
5803--B
2023-2024 Regular Sessions
IN ASSEMBLY
March 23, 2023
___________
Introduced by M. of A. PAULIN, GUNTHER, McDONALD, FAHY, STERN, KIM,
HYNDMAN, WOERNER, SHIMSKY, CARROLL, DICKENS, McMAHON, SIMON, McDO-
NOUGH, RA, DE LOS SANTOS, STIRPE, BUTTENSCHON, SILLITTI, SEAWRIGHT,
THIELE, LEVENBERG, HEVESI, MANKTELOW, BRABENEC, JENSEN, DeSTEFANO --
read once and referred to the Committee on Health -- committee
discharged, bill amended, ordered reprinted as amended and recommitted
to said committee -- recommitted to the Committee on Health in accord-
ance with Assembly Rule 3, sec. 2 -- committee discharged, bill
amended, ordered reprinted as amended and recommitted to said commit-
tee
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:
1 Section 1. The public health law is amended by adding a new article
2 20-B to read as follows:
3 ARTICLE 20-B
4 STATE PARKINSON'S DISEASE REGISTRY
5 Section 2010. Definitions.
6 2011. Duty to report.
7 2012. Establishment of registry.
8 2013. Duties of the department.
9 2014. Duties of the commissioner.
10 § 2010. Definitions. As used in this article, the following terms
11 shall have the following meanings:
12 1. "Parkinson's disease" means a chronic and progressive neurologic
13 disorder resulting from deficiency of the neurotransmitter dopamine as
14 the consequence of specific degenerative changes in the area of the
15 brain called the basal ganglia.
16 2. "Parkinsonisms" means related conditions that cause a combination
17 of the movement abnormalities seen in Parkinson's disease including, but
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD08983-04-4
A. 5803--B 2
1 not limited to, tremor at rest, slow movement, muscle rigidity, impaired
2 speech, or muscle stiffness, which often overlap with and can evolve
3 from what appears to be Parkinson's disease.
4 § 2011. Duty to report. 1. Every physician, nurse practitioner, physi-
5 cian assistant and general hospital that diagnoses or is treating a
6 patient diagnosed with Parkinson's disease or Parkinsonisms, shall give
7 notice no later than one hundred eighty days of every case of
8 Parkinson's disease coming under their care, to the department, in a
9 format to be determined by the commissioner, except as otherwise
10 provided in this article.
11 2. All patients diagnosed with Parkinson's disease or Parkinsonisms
12 shall be provided written and verbal notice regarding the collection of
13 information and patient data on Parkinson's disease. Patients who do not
14 wish to participate in the collection of data shall affirmatively opt-
15 out in writing after ample opportunity to review such notice, provided
16 that, the mere incidence of a patient with Parkinson's disease shall be
17 the sole required information for the registry under section two thou-
18 sand twelve of this article for any patient who chooses not to partic-
19 ipate.
20 § 2012. Establishment of registry. 1. The department shall establish a
21 Parkinson's disease registry for the collection of information on the
22 incidence and prevalence of Parkinson's disease and Parkinsonisms. The
23 department may consult with Parkinson's disease experts, including
24 neurologists, patients living with Parkinson's disease, and Parkinson's
25 disease researchers to assist in the development and implementation of
26 such registry, and to determine what data shall be collected.
27 2. All information maintained by the department under the provisions
28 of this section shall be confidential except as necessary to carry out
29 the provisions of this section and shall not be released for any other
30 purpose.
31 3. The department may enter into an agreement to provide data
32 collected in the Parkinson's disease registry to the federal Centers for
33 Disease Control and Prevention, or successor agency, to local health
34 officers, or health researchers for the study of Parkinson's disease for
35 public health and research purposes. Data shall be provided in summary,
36 statistical, aggregate, or other form such that no individual person can
37 be identified.
38 4. On or before January first, two thousand twenty-six, the department
39 shall create and maintain a public website called the "New York state
40 Parkinson's disease registry" which shall include information on the
41 incidence and prevalence of Parkinson's disease and Parkinsonisms in the
42 state by county, and demographic information on affected patients.
43 § 2013. Duties of the department. 1. Parkinson's disease reports and
44 data shall be maintained by the department in a manner suitable for
45 research purposes, and shall be made available to persons as set forth
46 in section two thousand twelve of this article.
47 2. All information collected under this article shall be confidential
48 insofar as the identity of individual patients is concerned and shall be
49 used solely for the purposes as provided in this article. Access to such
50 information shall be limited to authorized employees of the department
51 as well as persons and organizations defined in section two thousand
52 twelve of this article with valid scientific interest and qualifica-
53 tions, as determined by the commissioner, who are engaged in demograph-
54 ic, epidemiological, or other similar studies related to public health.
55 3. The department shall maintain an accurate record of all persons who
56 are given access to the information contained in the Parkinson's disease
A. 5803--B 3
1 registry. Such record shall include the name of the person authorizing
2 access, the name, title and organizational affiliation of persons given
3 access, dates of access, and the specific purposes for which information
4 is to be used.
5 4. Any person who, in violation of a written agreement to maintain
6 confidentiality, discloses any information provided under this section,
7 or who uses information provided under this section in a manner other
8 than that prescribed by the commissioner, may be denied further access
9 to any confidential information maintained by the department.
10 § 2014. Duties of the commissioner. The commissioner may promulgate
11 any regulations necessary to implement the provisions of this article,
12 including but not limited to:
13 1. Establishing the form, content, and manner by which providers shall
14 report Parkinson's disease information into the registry established
15 under section two thousand twelve of this article;
16 2. Prescribing the permissible uses for the information made available
17 under this article; and
18 3. Establishing procedures to maintain the confidentiality of informa-
19 tion collected by providers and provided to members of the department
20 pursuant to this article. This shall include a procedure to ensure that
21 confidential patient information is deidentified prior to being provided
22 to authorized participants under this article.
23 § 2. This act shall take effect on the ninetieth day after it shall
24 have become a law.
