Bill Text: NY A05803 | 2023-2024 | General Assembly | Amended

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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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 24-7)

Status: (Introduced) 2024-05-16 - substituted by s4674a [A05803 Detail]

Download: New_York-2023-A05803-Amended.html

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                STATE OF NEW YORK
        ________________________________________________________________________

                                         5803--A

                               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

        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.
                                                                   LBD08983-02-3
        A. 5803--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-five, the depart-
    36  ment shall create and maintain a public website  called  the  "New  York
    37  state  Parkinson's  disease registry" which shall include information on
    38  the incidence and prevalence of Parkinson's disease and Parkinsonisms in
    39  the 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
        A. 5803--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.