State of Illinois
92nd General Assembly
Legislation

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92_SB1834

 
                                               LRB9215377LBcs

 1        AN ACT concerning lupus.

 2        Be it enacted by the People of  the  State  of  Illinois,
 3    represented in the General Assembly:

 4        Section  1.  Short  title.   This Act may be cited as the
 5    Lupus Erythematosus Registry Act.

 6        Section 5.  Legislative findings.  The  General  Assembly
 7    finds that:
 8        (1)  More  complete  and precise statistical data than is
 9    presently  available   is   necessary   to   evaluate   lupus
10    erythematosus  treatment  and  prevention  measures  than  is
11    currently available.
12        (2)  The  creation  of  the  Lupus Erythematosus Registry
13    will provide a  vital foundation for a concerted State effort
14    to reduce the incidence of lupus erythematosus in this State.

15        Section 10.  Definitions.  For the purposes of this  Act,
16    unless the context requires otherwise:
17        "Lupus"  means  lupus  erythematosus,  as  defined by the
18    Centers for Disease Control or  the  National  Institutes  of
19    Health.
20        "Department"  means  the  Illinois  Department  of Public
21    Health.
22        "Director" means the Director of Public Health.
23        "Registry" means the Lupus Erythematosus Registry.

24        Section 15.  Lupus Erythematosus Registry.
25        (a)  The Department shall establish and maintain a  Lupus
26    Erythematosus  Registry  consisting  of  a record of cases of
27    lupus that  occur  in  Illinois  and  any  other  information
28    concerning  the  cases  as it deems necessary or appropriate.
29    These cases shall be used to conduct  thorough  and  complete
 
                            -2-                LRB9215377LBcs
 1    epidemiological surveys of lupus in  Illinois and to evaluate
 2    existing  control and prevention measures.  Cases included in
 3    the Registry shall be identified by a  code  rather  than  by
 4    name.   To   the  extent  feasible,  the  Registry  shall  be
 5    compatible with other national models so as to facilitate the
 6    coordination of information with other data bases.
 7        (b)  To facilitate the collection of information relating
 8    to cases of lupus, the Department shall have the authority to
 9    require  physicians,  hospitals,  laboratories,   and   other
10    facilities  that  diagnose such conditions to report cases of
11    lupus to the Department, and to  require  the  submission  of
12    such  other  information  pertaining to or in connection with
13    the reported cases  as  the  Department  deems  necessary  or
14    appropriate for the purposes of this Act.  The Department may
15    promulgate   rules   specifying   the  types  of  information
16    required, requirements for follow up of  patients,  frequency
17    of reporting,  methods of submitting the information, and any
18    other  details  deemed  by  the Department to be necessary or
19    appropriate for the administration of this Act.   Nothing  in
20    this  Act  shall  be  construed  to  compel any individual to
21    submit to a medical examination or supervision.
22        (c)  The Director shall by rule establish  standards  for
23    ensuring  the  protection of information made confidential or
24    privileged under law.

25        Section  20.  Funds.   The  Department  shall  have   the
26    authority to accept, receive, and administer on behalf of the
27    Registry  grants, gifts, loans, or other funds made available
28    to the Registry from any source for the purposes of this Act.

29        Section 25.  Annual report.  The Department shall file an
30    annual report to the  General  Assembly  that  shall  include
31    information  on  the  progress  of  the  Registry, as well as
32    descriptions of any related studies that are underway or have
 
                            -3-                LRB9215377LBcs
 1    been completed.

 2        Section 30.  Confidentiality.
 3        (a)  The Department may not release information  gathered
 4    pursuant  to  this Act unless (i) it is in a statistical form
 5    that does not identify the reporting  entity,  physician,  or
 6    patient in any way, including by address; or (ii) the release
 7    or  transfer is to an Illinois local public health department
 8    or to a registry or health department  of another state,  and
 9    is of information concerning a person who is residing in that
10    jurisdiction.
11        (b)  All  data  obtained directly from medical records of
12    individual  patients shall be for the confidential use of the
13    Department and those entities authorized by the Department to
14    view those records in order to carry out the purposes of this
15    Act.
16        (c)  The  identity  of  any  person  whose  condition  or
17    treatment has been studied, or any facts that are  likely  to
18    reveal  the identity of the person, shall be confidential and
19    shall not be revealed in  any  report  or  any  other  matter
20    prepared,  released, or published.  Researchers may, however,
21    use  the  names  of  persons   when   requesting   additional
22    information for research studies approved by the  Department;
23    provided,   however,  that  when  a  request  for  additional
24    information is to be made, the Department must  first  obtain
25    authorization  from  the  patient  or  the  patient's legally
26    authorized representative.
27        (d)  No  liability  shall   attach   to   any   hospital,
28    physician,  or other facility submitting information pursuant
29    to this Act based upon a claim that the hospital,  physician,
30    or facility reported information that may be confidential.

31        Section  35.  Rules.  The Department may promulgate rules
32    for the implementation of this Act.

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