STATE OF NEW YORK ________________________________________________________________________ 4674--A 2023-2024 Regular Sessions IN SENATE February 13, 2023 ___________ Introduced by Sens. HOYLMAN-SIGAL, ASHBY, CLEARE, GALLIVAN, HELMING, MARTINS, MAY, OBERACKER, RIVERA -- read twice and ordered printed, and when printed to be committed to the Committee on Health -- recommitted to the Committee on Health in accordance with Senate Rule 6, sec. 8 -- committee discharged, bill amended, ordered reprinted as amended and recommitted to said committee 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 18 not limited to, tremor at rest, slow movement, muscle rigidity, impaired 19 speech, or muscle stiffness, which often overlap with and can evolve 20 from what appears to be Parkinson's disease. EXPLANATION--Matter in italics (underscored) is new; matter in brackets [ ] is old law to be omitted. LBD08983-05-4
S. 4674--A 2 1 § 2011. Duty to report. 1. Every physician, nurse practitioner, physi- 2 cian assistant and general hospital that diagnoses or is treating a 3 patient diagnosed with Parkinson's disease or Parkinsonisms, shall give 4 notice no later than one hundred eighty days of every case of 5 Parkinson's disease coming under their care, to the department, in a 6 format to be determined by the commissioner, except as otherwise 7 provided in this article. 8 2. All patients diagnosed with Parkinson's disease or Parkinsonisms 9 shall be provided written and verbal notice regarding the collection of 10 information and patient data on Parkinson's disease. Patients who do not 11 wish to participate in the collection of data shall affirmatively opt- 12 out in writing after ample opportunity to review such notice, provided 13 that, the mere incidence of a patient with Parkinson's disease shall be 14 the sole required information for the registry under section two thou- 15 sand twelve of this article for any patient who chooses not to partic- 16 ipate. 17 § 2012. Establishment of registry. 1. The department shall establish a 18 Parkinson's disease registry for the collection of information on the 19 incidence and prevalence of Parkinson's disease and Parkinsonisms. The 20 department may consult with Parkinson's disease experts, including 21 neurologists, patients living with Parkinson's disease, and Parkinson's 22 disease researchers to assist in the development and implementation of 23 such registry, and to determine what data shall be collected. 24 2. All information maintained by the department under the provisions 25 of this section shall be confidential except as necessary to carry out 26 the provisions of this section and shall not be released for any other 27 purpose. 28 3. The department may enter into an agreement to provide data 29 collected in the Parkinson's disease registry to the federal Centers for 30 Disease Control and Prevention, or successor agency, to local health 31 officers, or health researchers for the study of Parkinson's disease for 32 public health and research purposes. Data shall be provided in summary, 33 statistical, aggregate, or other form such that no individual person can 34 be identified. 35 4. On or before January first, two thousand twenty-six, the department 36 shall create and maintain a public website called the "New York state 37 Parkinson's disease registry" which shall include information on the 38 incidence and prevalence of Parkinson's disease and Parkinsonisms in the 39 state by county, and demographic information on affected patients. 40 § 2013. Duties of the department. 1. Parkinson's disease reports and 41 data shall be maintained by the department in a manner suitable for 42 research purposes, and shall be made available to persons as set forth 43 in section two thousand twelve of this article. 44 2. All information collected under this article shall be confidential 45 insofar as the identity of individual patients is concerned and shall be 46 used solely for the purposes as provided in this article. Access to such 47 information shall be limited to authorized employees of the department 48 as well as persons and organizations defined in section two thousand 49 twelve of this article with valid scientific interest and qualifica- 50 tions, as determined by the commissioner, who are engaged in demograph- 51 ic, epidemiological, or other similar studies related to public health. 52 3. The department shall maintain an accurate record of all persons who 53 are given access to the information contained in the Parkinson's disease 54 registry. Such record shall include the name of the person authorizing 55 access, the name, title and organizational affiliation of persons given
S. 4674--A 3 1 access, dates of access, and the specific purposes for which information 2 is to be used. 3 4. Any person who, in violation of a written agreement to maintain 4 confidentiality, discloses any information provided under this section, 5 or who uses information provided under this section in a manner other 6 than that prescribed by the commissioner, may be denied further access 7 to any confidential information maintained by the department. 8 § 2014. Duties of the commissioner. The commissioner may promulgate 9 any regulations necessary to implement the provisions of this article, 10 including but not limited to: 11 1. Establishing the form, content, and manner by which providers shall 12 report Parkinson's disease information into the registry established 13 under section two thousand twelve of this article; 14 2. Prescribing the permissible uses for the information made available 15 under this article; and 16 3. Establishing procedures to maintain the confidentiality of informa- 17 tion collected by providers and provided to members of the department 18 pursuant to this article. This shall include a procedure to ensure that 19 confidential patient information is deidentified prior to being provided 20 to authorized participants under this article. 21 § 2. This act shall take effect on the ninetieth day after it shall 22 have become a law.