Bill Text: NY S07185 | 2017-2018 | General Assembly | Introduced

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Bill Title: Provides that the department of health shall conduct a program of epidemiological assessments of the incidence of Parkinson's disease in the state.

Sponsorship: Partisan Bill (Republican 1)

Status: (Introduced - Dead) 2018-01-03 - REFERRED TO HEALTH [S07185 Detail]

Download: New_York-2017-S07185-Introduced.html

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                STATE OF NEW YORK
        ________________________________________________________________________
                                          7185
                    IN SENATE
                                       (Prefiled)
                                     January 3, 2018
                                       ___________
        Introduced  by  Sen.  SERINO -- read twice and ordered printed, and when
          printed to be committed to the Committee on Health
        AN ACT to amend the public health  law,  in  relation  to  developing  a
          Parkinson's disease assessment program in the state
          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 18
     2  to read as follows:
     3                                 ARTICLE 18
     4                   PARKINSON'S DISEASE ASSESSMENT PROGRAM
     5  Section 1801. Definitions.
     6          1802. Parkinson's disease registry.
     7    § 1801. Definitions. For the purposes of this article: 1. "Parkinson's
     8  disease" shall  mean  a  chronic  and  progressive  neurologic  disorder
     9  resulting from deficiency of the neurotransmitter dopamine as the conse-
    10  quence of degenerative, vascular, or inflammatory changes in the area of
    11  the brain called the basal ganglia. Such disorder shall be characterized
    12  by  tremor  at  rest,  slow  movements, and rigidity of movement, droopy
    13  posture, muscle weakness, and unsteady or shuffling gait; and
    14    2. "Facility" shall mean any governmental or private  agency,  depart-
    15  ment,  institution, clinic, laboratory, hospital, nursing care facility,
    16  health maintenance organization, association  or  other  similar  entity
    17  that provides medical care.
    18    § 1802. Parkinson's  disease registry. 1. The department shall conduct
    19  a  program  of    epidemiological  assessments  of  the   incidence   of
    20  Parkinson's disease in the state. Such program shall include, but not be
    21  limited  to,  the  monitoring  of  Parkinson's  disease  associated with
    22  suspected chemical agents encountered by  the  general  public  both  in
    23  specific occupations and in the environment generally.
    24    2.  An  attending  physician or a person representing or employed by a
    25  facility as defined by the commissioner shall report  the  existence  of
    26  Parkinson's  disease  to  the  department  when  such physician or other
    27  person diagnoses the presence of that illness or a patient is prescribed
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD13995-01-7
        S. 7185                             2
     1  medication that is used to treat Parkinson's disease or  related  neuro-
     2  logical conditions.
     3    3.  (a)  The  commissioner  shall analyze available incidence data and
     4  prepare reports as necessary to identify Parkinson's disease hazards to:
     5    (i) public health;
     6    (ii) specific occupations; and
     7    (iii) geographic areas and their interventions and remedies.
     8    (b) The commissioner shall issue an annual report that shall be desig-
     9  nated as a Parkinson's disease report and shall, at a  minimum,  contain
    10  information which the commissioner establishes as necessary to identify,
    11  locate and investigate the:
    12    (i) occurrence;
    13    (ii) frequency;
    14    (iii) incidence; and
    15    (iv) concentrations in particular occupations; cause, effect and prog-
    16  nosis  of Parkinson's disease, and other relevant data and findings with
    17  respect thereto.
    18    (c) Parkinson's disease reports and data shall be  maintained  by  the
    19  department in a manner suitable for research purposes, and shall be made
    20  available to persons set forth in this article.
    21    4.  Notwithstanding  any  other  provisions  of  law,  all information
    22  collected pursuant to this article shall be confidential insofar as  the
    23  identity of the individual patient is concerned and shall be used solely
    24  for the purposes as provided in this article. Access to such information
    25  shall  be  limited  to  the  authorized  employees of the department and
    26  persons with a valid scientific interest and qualifications, as  defined
    27  by  the commissioner, who are engaged in demographic, epidemioligical or
    28  other similar studies related to health, and who agree, in  writing,  to
    29  maintain confidentiality as established by the commissioner.
    30    5. (a) The department shall maintain an accurate record of all persons
    31  who  are  given  access to the information contained in such Parkinson's
    32  disease reports as established in subdivision  three  of  this  section.
    33  Such record shall include:
    34    (i) the name of the person authorizing access;
    35    (ii)  the name, title, and organizational affiliation of persons given
    36  access; and
    37    (iii) dates of access and the specific purpose for  which  information
    38  is to be used.
    39    (b)  The  record  of  access shall be open to public inspection during
    40  normal operating hours of the department.
    41    6. Persons with a valid scientific interest who are engaged  in  demo-
    42  graphic, epidemiological, or other similar studies related to health who
    43  meet  qualifications  as determined by the department, and who agree, in
    44  writing, to maintain confidentiality, may be authorized access to confi-
    45  dential information. Any person who, in violation of a written agreement
    46  to maintain confidentiality, discloses any information provided pursuant
    47  to this section, or who  uses  information  provided  pursuant  to  this
    48  section  in a manner other than that prescribed by the commissioner, may
    49  be denied further access to any confidential information  maintained  by
    50  the department.
    51    7.  Notwithstanding  any  other  provisions of law, the department may
    52  authorize a New York medical research institution to oversee  and  main-
    53  tain  the  Parkinson's disease registry upon a showing of the ability to
    54  collect and analyze information in a  timely  manner  and  maintain  the
    55  confidentiality  and  privacy of all records housed therein. The commis-
    56  sioner shall  remain  responsible  for  ensuring  reporting  procedures,
        S. 7185                             3
     1  privacy  compliance, and approval for access to the records are suitable
     2  and compliant with all rules and regulations.
     3    8.  The commissioner may enter into contracts as are necessary for the
     4  conduct of such program and may accept, on behalf of the  state,  grants
     5  of public or private funds for such program.
     6    9.  The  commissioner  may coordinate the Parkinson's disease registry
     7  with all other public health registries where practicable, including but
     8  not limited to article twenty and section two thousand four hundred  one
     9  of  this  chapter, or any other epidemiological assessments conducted by
    10  the department to determine public health  incidence  rates  and  corre-
    11  lations  with  environmental factors, geographic locations, or any other
    12  statistically relevant information.
    13    10. The registry shall provide information to supplement  the  coordi-
    14  nating  council as provided by section two thousand four-a of this chap-
    15  ter. Upon the recommendation of the coordinating council and a  majority
    16  vote,  a  designee  shall be consulted to attend all council meetings to
    17  provide information and analysis of  information  contained  within  the
    18  Parkinson's disease registry and reports.
    19    11.  The  department, where practicable, shall make available informa-
    20  tion regarding research opportunities, clinical trials, or public aware-
    21  ness campaigns on its website related to Parkinson's  disease  research,
    22  identification, and treatment.
    23    12.  The commissioner shall promulgate rules and regulations to imple-
    24  ment the provisions of this article.
    25    § 2. This act shall take effect immediately.