Bill Text: NY A05803 | 2023-2024 | General Assembly | Introduced
NOTE: There are more recent revisions of this legislation. Read Latest Draft
Bill Title: 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.
Spectrum: Moderate Partisan Bill (Democrat 24-6)
Status: (Introduced) 2024-05-16 - substituted by s4674a [A05803 Detail]
Download: New_York-2023-A05803-Introduced.html
Bill Title: 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.
Spectrum: Moderate Partisan Bill (Democrat 24-6)
Status: (Introduced) 2024-05-16 - substituted by s4674a [A05803 Detail]
Download: New_York-2023-A05803-Introduced.html
STATE OF NEW YORK ________________________________________________________________________ 5803 2023-2024 Regular Sessions IN ASSEMBLY March 23, 2023 ___________ Introduced by M. of A. PAULIN -- read once and referred 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: 1 Section 1. Article 2 of the public health law is amended by adding a 2 new title 9 to read as follows: 3 TITLE IX 4 STATE PARKINSON'S DISEASE REGISTRY 5 Section 269-a. Definitions. 6 269-b. Registry established. 7 269-c. Reports. 8 269-d. New York state Parkinson's disease research registry 9 website. 10 § 269-a. Definitions. For the purposes of this title: 11 1. "Parkinson's disease" means a chronic and progressive neurologic 12 disorder resulting from deficiency of the neurotransmitter dopamine as 13 the consequence of specific degenerative changes in the area of the 14 brain called the basal ganglia. It is characterized by tremor at rest, 15 slow movements, muscle rigidity, stooped posture, and unsteady or shuf- 16 fling gait. 17 2. "Parkinsonisms" means related conditions that cause a combination 18 of the movement abnormalities seen in Parkinson's disease, such as trem- 19 or at rest, slow movement, muscle rigidity, impaired speech or muscle 20 stiffness, which often overlap with and can evolve from what appears to 21 be Parkinson's disease. Parkinsonisms include, but are not exclusive to, 22 the following: Multiple System Atrophy (MSA), Dementia with Lewy Bodies 23 (DLB), Corticobasal Degeneration (CBD), and Progressive Supranuclear 24 Palsy (PSP). EXPLANATION--Matter in italics (underscored) is new; matter in brackets [] is old law to be omitted. LBD08983-01-3A. 5803 2 1 § 269-b. Registry established. 1. The department shall collect data on 2 the incidence of Parkinson's disease in this state and other epidemio- 3 logical data. The registry and system of collection and dissemination of 4 information shall be under the direction of the commissioner, who may 5 enter into contracts, grants or other agreements as are necessary for 6 the conduct of the registry. 7 2. (a) The department shall, within ninety days of the effective date 8 of this section, establish a Parkinson's disease registry advisory 9 committee to assist in the development and implementation of the regis- 10 try; determine what data shall be collected; and generally, advise the 11 department. 12 (b) The commissioner shall select the members of the committee. 13 Membership of the committee shall include: 14 (i) a neurologist; 15 (ii) a movement disorder specialist; 16 (iii) a primary care provider; 17 (iv) a physician informaticist; 18 (v) a patient living with Parkinson's disease; 19 (vi) a public health professional; 20 (vii) a population health researcher familiar with registries; 21 (viii) a Parkinson's disease researcher; and 22 (ix) anyone else the commissioner deems necessary. 23 3. (a) The department shall designate Parkinson's disease and related 24 Parkinsonisms as advised by the advisory committee as diseases required 25 to be reported in the state or any part of the state. 26 (b) The department shall establish a system for the collection and 27 dissemination of information determining the incidence and prevalence of 28 Parkinson's disease and related Parkinsonisms, as advised by the advi- 29 sory committee. 30 (c) All cases of Parkinson's disease diagnosed or treated in this 31 state shall be reported to the department, provided the mere incidence 32 of a patient with Parkinson's disease shall be the sole required infor- 33 mation for this registry for any patient who chooses not to participate. 34 For the subset of patients who choose not to participate, no further 35 data shall be reported to the registry. The department may create, 36 review and revise a list of data points required as part of mandated 37 Parkinson's disease reporting under this section. Such list shall 38 include, but not be limited to necessary triggering diagnostic condi- 39 tions, consistent with the latest International Statistical Classifica- 40 tion of Diseases and Related Health Problems, and resulting case data 41 including, but not limited to, diagnosis, treatment and survival. The 42 department may implement and administer this paragraph through a bulle- 43 tin, or similar instruction, to providers without taking regulatory 44 action. 45 (d) The department shall provide notification of the mandatory report- 46 ing of Parkinson's disease and Parkinsonisms on its website and may also 47 provide that information to professional associations representing 48 physicians, nurse practitioners, and hospitals at least ninety days 49 prior to requiring information be reported. 50 (e) A hospital, facility, physician, surgeon, physician assistant and 51 nurse practitioners who diagnose or are treating a patient diagnosed 52 with Parkinson's disease or Parkinsonisms and have primary responsibil- 53 ity for the treatment and care of the patient for Parkinson's disease or 54 Parkinsonisms shall report each case of Parkinson's disease and Parkin- 55 sonisms to the department in a format prescribed by the department. The 56 department is authorized to enter into data sharing contracts with dataA. 5803 3 1 reporting entities and their associated electronic medical record 2 systems vendors to securely and confidentially receive information 3 related to Parkinson's disease testing, diagnosis and treatment. 4 4. All patients diagnosed with Parkinson's disease or Parkinsonisms, 5 as advised by the advisory committee, shall be provided a notice in 6 writing and orally regarding the collection of information and patient 7 data on Parkinson's disease. Patients who do not wish to participate in 8 the collection of data for purposes of research in this registry shall 9 affirmatively opt-out in writing after an opportunity to review the 10 documents and ask questions. No patient shall be forced to participate 11 in this registry. 12 5. The department may enter into agreements to furnish data collected 13 in this registry to other states' Parkinson's disease registries, feder- 14 al Parkinson's disease control agencies, local health officers, or 15 health researchers for the study of Parkinson's disease. Before confi- 16 dential information is disclosed to those agencies, officers, research- 17 ers, or out-of-state registries, the requesting entity shall agree in 18 writing to maintain the confidentiality of the information, and in the 19 case of researchers, shall also do both of the following: 20 (a) obtain approval of their committee for the protection of human 21 subjects established in accordance with Part 46 (commencing with Section 22 46.101) of Title 45 of the Code of Federal Regulations; and 23 (b) provide documentation to the department that demonstrates to the 24 department's satisfaction that the entity has established the procedures 25 and ability to maintain the confidentiality of the information. 26 6. Except as otherwise provided in this section, all information 27 collected pursuant to this section shall be confidential. For purposes 28 of this section, this information shall be referred to as confidential 29 information. To ensure privacy, the department shall promulgate a coding 30 system that removes any identifying information about the patient. 31 7. (a) Notwithstanding any other law, a disclosure authorized by this 32 section shall include only the information necessary for the stated 33 purpose of the requested disclosure, used for the approved purpose, and 34 not be further disclosed. 35 (b) Provided the security of confidentiality has been documented, the 36 furnishing of confidential information to the department or its author- 37 ized representative in accordance with this section shall not expose any 38 person, agency or entity furnishing information to liability, and shall 39 not be considered a waiver of any privilege or a violation of a confi- 40 dential relationship. 41 (c) The department shall maintain an accurate record of all persons 42 who are given access to confidential information. The record shall 43 include: the name of the person authorizing access; name, title, 44 address, and organizational affiliation of persons given access; dates 45 of access; and the specific purpose for which information is to be used. 46 The record of access shall be open to public inspection during normal 47 operating hours of the department. 48 (d) Notwithstanding any other law, confidential information shall not 49 be available for subpoena, shall not be disclosed, discoverable or 50 compelled to be produced in any civil, criminal, administrative or other 51 proceeding. Confidential information shall not be deemed admissible as 52 evidence in any civil, criminal, administrative or other tribunal or 53 court for any reason. 54 (e) This subdivision does not prohibit the publication by the depart- 55 ment of reports and statistical compilations that do not in any way 56 identify individual cases or individual sources of information.A. 5803 4 1 (f) Notwithstanding the restrictions in this subdivision, the individ- 2 ual to whom the information pertains shall have access to his or her own 3 information. 4 8. This section does not preempt the authority of facilities or indi- 5 viduals providing diagnostic or treatment services to patients with 6 Parkinson's disease to maintain their own facility-based Parkinson's 7 disease registries. 8 § 269-c. Reports. On or before January first, two thousand twenty- 9 five, and every year thereafter, the department shall report to the 10 legislature and governor a yearly program summary update on the inci- 11 dence and prevalence of Parkinson's disease in the state by county, how 12 many records have been included and reported into the registry, and 13 demographic information such as patients by age, gender and race. This 14 yearly report shall also be published in a downloadable format on the 15 department's website or the designated New York state Parkinson's 16 disease research registry website. 17 § 269-d. New York state Parkinson's disease research registry website. 18 On or before January first, two thousand twenty-five, the department 19 shall create and maintain a webpage called the "New York State 20 Parkinson's Disease Research Registry" where the public may view infor- 21 mation related to the registry, a yearly program summary, and any other 22 relevant or helpful information related to the registry as deemed neces- 23 sary by the advisory council. 24 § 2. This act shall take effect on the thirtieth day after it shall 25 have become a law.
