103860. (a) The department shall conduct a program of
epidemiological assessments of the incidence of Parkinson's disease.
The program shall encompass all areas of the state for which
Parkinson's disease incidence data are available. The program shall
include the monitoring of Parkinson's disease associated with
suspected chemical agents encountered by the general public both in
occupational locations and in the environment generally.
(b) The program shall be under the direction of the director, who
may enter into contracts as are necessary for the conduct of the
program and may accept, on behalf of the state, grants of public or
private funds for the program. The director shall analyze available
incidence data and prepare reports as necessary to identify Parkinson'
s disease hazards to the public health and their remedies.
(c) This chapter shall be implemented only to the extent funds
from federal or private sources are made available for this purpose.
When the department determines that sufficient private or federal
funds have been received for the implementation of this chapter, the
department shall provide notification of the receipt of the funds on
its Internet Web site and shall also provide that information to
associations representing physicians and pharmacists, and directly to
the California State Board of Pharmacy and the Medical Board of
California within 90 days.
(d) The department is encouraged to convene a task force comprised
of researchers with expertise in Parkinson's disease, advocates for
patients with Parkinson's disease, and other individuals with
relevant expertise to provide support and advice for the
implementation and funding of the California Parkinson's Disease
Registry.
103865. (a) The director shall establish a statewide system for the
collection of information determining the incidence of Parkinson's
disease. Commencing January 1, 2005, the director shall begin phasing
in the statewide Parkinson's disease reporting regions. By July 1,
2006, all county or regional registries shall be implemented or
initiated. By July 1, 2007, the statewide Parkinson's disease
reporting system shall be fully operational. On or before June 1,
2005, the director shall submit an implementation and funding
schedule to the Legislature.
(b) The department may designate any demographic parts of the
state as regional Parkinson's disease incidence reporting areas and
may establish regional Parkinson's disease registries, with the
responsibility and authority to carry out the intent of this section
in designated areas. Designated regional registries shall provide to
the department, on a timely basis, Parkinson's disease incidence data
as designated by the department. The department may contract with an
agency, including, but not limited to, a health systems agency,
single-county health department, multicounty health department
grouping, or nonprofit professional association, representing a
designated Parkinson's disease reporting region for the purposes of
collecting and collating Parkinson's disease incidence data.
(c) The director shall designate Parkinson's disease as a disease
required to be reported in the state or any demographic parts of the
state in which Parkinson's disease information is collected under
this section. All cases of Parkinson's disease diagnosed or treated
in the reporting area shall thereafter be reported to the
representative of the department authorized to compile the Parkinson'
s disease data, or any individual, agency, or organization designated
to cooperate with that representative.
(d) (1) Any hospital or other facility providing therapy to
Parkinson's disease patients within an area designated as a Parkinson'
s disease reporting area shall report each case of Parkinson's
disease to the department or the authorized representative of the
department in a format prescribed by the department. If the hospital
or other facility fails to report in a format prescribed by the
department, the department's authorized representative may access the
information from the hospital or the facility and report it in the
appropriate format. In these cases, the hospital or other facility
shall reimburse the department or the authorized representative for
its costs to access and report the information.
(2) Any physician and surgeon, pharmacist, or other health care
practitioner diagnosing or providing treatment for Parkinson's
disease patients shall report each Parkinson's disease case to the
department or the authorized representative of the department except
for those cases directly referred to a treatment facility or those
previously admitted to a treatment facility for diagnosis or
treatment of that instance of Parkinson's disease.
(e) All physicians, hospitals, outpatient clinics, and all other
facilities, individuals, or agencies providing diagnostic or
treatment services to patients with Parkinson's disease shall grant
to the department or the authorized representative access to all
records that would identify cases of Parkinson's disease or would
establish characteristics of Parkinson's disease, treatment of
Parkinson's disease, or medical status of any identified Parkinson's
disease patient. Willful failure to grant access to those records
shall be punishable by a civil penalty of up to five hundred dollars
($500) each day access is refused. Any civil penalties collected
pursuant to this subdivision shall be deposited by the department in
the General Fund.
(f) (1) Except as otherwise provided in this section, all
information collected pursuant to this section shall be confidential.
For purposes of this section, this information shall be referred to
as "confidential information."
(2) The department and any regional Parkinson's disease registry
designated by the department shall use the information to determine
the sources of Parkinson's disease.
(3) Persons with a valid scientific interest who are engaged in
demographic, epidemiological, or other similar studies related to
health who meet qualifications as determined by the department, and
who agree, in writing, to maintain confidentiality, may be authorized
access to confidential information.
(4) The department and any regional Parkinson's disease registry
designated by the department may enter into agreements to furnish
confidential information to other states' Parkinson's disease
registries, federal Parkinson's disease control agencies, local
health officers, or health researchers for the purposes of
determining the sources of Parkinson's disease and evaluating
measures designed to eliminate, alleviate, or ameliorate their
effect. Before confidential information is disclosed to those
agencies, officers, researchers, or out-of-state registries, the
requesting entity shall agree in writing to maintain the
confidentiality of the information, and in the case of researchers,
shall also do both of the following:
(A) Obtain approval of their committee for the protection of human
subjects established in accordance with Part 46 (commencing with
Section 46.101) of Title 45 of the Code of Federal Regulations.
(B) Provide documentation to the department that demonstrates to
the department's satisfaction that the entity has established the
procedures and ability to maintain the confidentiality of the
information.
(5) Notwithstanding any other provision of law, any disclosure
authorized by this section shall include only the information
necessary for the stated purpose of the requested disclosure, used
for the approved purpose, and not be further disclosed.
(6) The furnishing of confidential information to the department
or its authorized representative in accordance with this section
shall not expose any person, agency, or entity furnishing information
to liability, and shall not be considered a waiver of any privilege
or a violation of a confidential relationship.
(7) The department shall maintain an accurate record of all
persons who are given access to confidential information. The record
shall include: the name of the person authorizing access; name,
title, address, and organizational affiliation of persons given
access; dates of access; and the specific purpose for which
information is to be used. The record of access shall be open to
public inspection during normal operating hours of the department.
(8) Notwithstanding any other provision of law, no part of the
confidential information shall be available for subpoena, nor shall
it be disclosed, discoverable, or compelled to be produced in any
civil, criminal, administrative, or other proceeding, nor shall this
information be deemed admissible as evidence in any civil, criminal,
administrative, or other tribunal or court for any reason.
(9) Nothing in this subdivision shall prohibit the publication by
the department of reports and statistical compilations that do not in
any way identify individual cases or individual sources of
information.
(10) Notwithstanding the restrictions in this subdivision, the
individual to whom the information pertains shall have access to his
or her own information in accordance with Chapter 1 (commencing with
Section 1798) of Title 1.8 of the Civil Code.
(g) For the purpose of this section, "Parkinson's disease" means a
chronic and progressive neurologic disorder resulting from
deficiency of the neurotransmitter dopamine as the consequence of
degenerative, vascular, or inflammatory changes in the area of the
brain called the basal ganglia. It is characterized by tremor at
rest, slow movements, rigidity of movement, droopy posture, muscle
weakness, and unsteady or shuffling gait.
(h) Nothing in this section shall preempt the authority of
facilities or individuals providing diagnostic or treatment services
to patients with Parkinson's disease to maintain their own
facility-based Parkinson's disease registries.
103860. (a) The department shall conduct a program of
epidemiological assessments of the incidence of Parkinson's disease.
The program shall encompass all areas of the state for which
Parkinson's disease incidence data are available. The program shall
include the monitoring of Parkinson's disease associated with
suspected chemical agents encountered by the general public both in
occupational locations and in the environment generally.
(b) The program shall be under the direction of the director, who
may enter into contracts as are necessary for the conduct of the
program and may accept, on behalf of the state, grants of public or
private funds for the program. The director shall analyze available
incidence data and prepare reports as necessary to identify Parkinson'
s disease hazards to the public health and their remedies.
(c) This chapter shall be implemented only to the extent funds
from federal or private sources are made available for this purpose.
When the department determines that sufficient private or federal
funds have been received for the implementation of this chapter, the
department shall provide notification of the receipt of the funds on
its Internet Web site and shall also provide that information to
associations representing physicians and pharmacists, and directly to
the California State Board of Pharmacy and the Medical Board of
California within 90 days.
(d) The department is encouraged to convene a task force comprised
of researchers with expertise in Parkinson's disease, advocates for
patients with Parkinson's disease, and other individuals with
relevant expertise to provide support and advice for the
implementation and funding of the California Parkinson's Disease
Registry.
103865. (a) The director shall establish a statewide system for the
collection of information determining the incidence of Parkinson's
disease. Commencing January 1, 2005, the director shall begin phasing
in the statewide Parkinson's disease reporting regions. By July 1,
2006, all county or regional registries shall be implemented or
initiated. By July 1, 2007, the statewide Parkinson's disease
reporting system shall be fully operational. On or before June 1,
2005, the director shall submit an implementation and funding
schedule to the Legislature.
(b) The department may designate any demographic parts of the
state as regional Parkinson's disease incidence reporting areas and
may establish regional Parkinson's disease registries, with the
responsibility and authority to carry out the intent of this section
in designated areas. Designated regional registries shall provide to
the department, on a timely basis, Parkinson's disease incidence data
as designated by the department. The department may contract with an
agency, including, but not limited to, a health systems agency,
single-county health department, multicounty health department
grouping, or nonprofit professional association, representing a
designated Parkinson's disease reporting region for the purposes of
collecting and collating Parkinson's disease incidence data.
(c) The director shall designate Parkinson's disease as a disease
required to be reported in the state or any demographic parts of the
state in which Parkinson's disease information is collected under
this section. All cases of Parkinson's disease diagnosed or treated
in the reporting area shall thereafter be reported to the
representative of the department authorized to compile the Parkinson'
s disease data, or any individual, agency, or organization designated
to cooperate with that representative.
(d) (1) Any hospital or other facility providing therapy to
Parkinson's disease patients within an area designated as a Parkinson'
s disease reporting area shall report each case of Parkinson's
disease to the department or the authorized representative of the
department in a format prescribed by the department. If the hospital
or other facility fails to report in a format prescribed by the
department, the department's authorized representative may access the
information from the hospital or the facility and report it in the
appropriate format. In these cases, the hospital or other facility
shall reimburse the department or the authorized representative for
its costs to access and report the information.
(2) Any physician and surgeon, pharmacist, or other health care
practitioner diagnosing or providing treatment for Parkinson's
disease patients shall report each Parkinson's disease case to the
department or the authorized representative of the department except
for those cases directly referred to a treatment facility or those
previously admitted to a treatment facility for diagnosis or
treatment of that instance of Parkinson's disease.
(e) All physicians, hospitals, outpatient clinics, and all other
facilities, individuals, or agencies providing diagnostic or
treatment services to patients with Parkinson's disease shall grant
to the department or the authorized representative access to all
records that would identify cases of Parkinson's disease or would
establish characteristics of Parkinson's disease, treatment of
Parkinson's disease, or medical status of any identified Parkinson's
disease patient. Willful failure to grant access to those records
shall be punishable by a civil penalty of up to five hundred dollars
($500) each day access is refused. Any civil penalties collected
pursuant to this subdivision shall be deposited by the department in
the General Fund.
(f) (1) Except as otherwise provided in this section, all
information collected pursuant to this section shall be confidential.
For purposes of this section, this information shall be referred to
as "confidential information."
(2) The department and any regional Parkinson's disease registry
designated by the department shall use the information to determine
the sources of Parkinson's disease.
(3) Persons with a valid scientific interest who are engaged in
demographic, epidemiological, or other similar studies related to
health who meet qualifications as determined by the department, and
who agree, in writing, to maintain confidentiality, may be authorized
access to confidential information.
(4) The department and any regional Parkinson's disease registry
designated by the department may enter into agreements to furnish
confidential information to other states' Parkinson's disease
registries, federal Parkinson's disease control agencies, local
health officers, or health researchers for the purposes of
determining the sources of Parkinson's disease and evaluating
measures designed to eliminate, alleviate, or ameliorate their
effect. Before confidential information is disclosed to those
agencies, officers, researchers, or out-of-state registries, the
requesting entity shall agree in writing to maintain the
confidentiality of the information, and in the case of researchers,
shall also do both of the following:
(A) Obtain approval of their committee for the protection of human
subjects established in accordance with Part 46 (commencing with
Section 46.101) of Title 45 of the Code of Federal Regulations.
(B) Provide documentation to the department that demonstrates to
the department's satisfaction that the entity has established the
procedures and ability to maintain the confidentiality of the
information.
(5) Notwithstanding any other provision of law, any disclosure
authorized by this section shall include only the information
necessary for the stated purpose of the requested disclosure, used
for the approved purpose, and not be further disclosed.
(6) The furnishing of confidential information to the department
or its authorized representative in accordance with this section
shall not expose any person, agency, or entity furnishing information
to liability, and shall not be considered a waiver of any privilege
or a violation of a confidential relationship.
(7) The department shall maintain an accurate record of all
persons who are given access to confidential information. The record
shall include: the name of the person authorizing access; name,
title, address, and organizational affiliation of persons given
access; dates of access; and the specific purpose for which
information is to be used. The record of access shall be open to
public inspection during normal operating hours of the department.
(8) Notwithstanding any other provision of law, no part of the
confidential information shall be available for subpoena, nor shall
it be disclosed, discoverable, or compelled to be produced in any
civil, criminal, administrative, or other proceeding, nor shall this
information be deemed admissible as evidence in any civil, criminal,
administrative, or other tribunal or court for any reason.
(9) Nothing in this subdivision shall prohibit the publication by
the department of reports and statistical compilations that do not in
any way identify individual cases or individual sources of
information.
(10) Notwithstanding the restrictions in this subdivision, the
individual to whom the information pertains shall have access to his
or her own information in accordance with Chapter 1 (commencing with
Section 1798) of Title 1.8 of the Civil Code.
(g) For the purpose of this section, "Parkinson's disease" means a
chronic and progressive neurologic disorder resulting from
deficiency of the neurotransmitter dopamine as the consequence of
degenerative, vascular, or inflammatory changes in the area of the
brain called the basal ganglia. It is characterized by tremor at
rest, slow movements, rigidity of movement, droopy posture, muscle
weakness, and unsteady or shuffling gait.
(h) Nothing in this section shall preempt the authority of
facilities or individuals providing diagnostic or treatment services
to patients with Parkinson's disease to maintain their own
facility-based Parkinson's disease registries.
103860. (a) The department shall conduct a program of
epidemiological assessments of the incidence of Parkinson's disease.
The program shall encompass all areas of the state for which
Parkinson's disease incidence data are available. The program shall
include the monitoring of Parkinson's disease associated with
suspected chemical agents encountered by the general public both in
occupational locations and in the environment generally.
(b) The program shall be under the direction of the director, who
may enter into contracts as are necessary for the conduct of the
program and may accept, on behalf of the state, grants of public or
private funds for the program. The director shall analyze available
incidence data and prepare reports as necessary to identify Parkinson'
s disease hazards to the public health and their remedies.
(c) This chapter shall be implemented only to the extent funds
from federal or private sources are made available for this purpose.
When the department determines that sufficient private or federal
funds have been received for the implementation of this chapter, the
department shall provide notification of the receipt of the funds on
its Internet Web site and shall also provide that information to
associations representing physicians and pharmacists, and directly to
the California State Board of Pharmacy and the Medical Board of
California within 90 days.
(d) The department is encouraged to convene a task force comprised
of researchers with expertise in Parkinson's disease, advocates for
patients with Parkinson's disease, and other individuals with
relevant expertise to provide support and advice for the
implementation and funding of the California Parkinson's Disease
Registry.
103865. (a) The director shall establish a statewide system for the
collection of information determining the incidence of Parkinson's
disease. Commencing January 1, 2005, the director shall begin phasing
in the statewide Parkinson's disease reporting regions. By July 1,
2006, all county or regional registries shall be implemented or
initiated. By July 1, 2007, the statewide Parkinson's disease
reporting system shall be fully operational. On or before June 1,
2005, the director shall submit an implementation and funding
schedule to the Legislature.
(b) The department may designate any demographic parts of the
state as regional Parkinson's disease incidence reporting areas and
may establish regional Parkinson's disease registries, with the
responsibility and authority to carry out the intent of this section
in designated areas. Designated regional registries shall provide to
the department, on a timely basis, Parkinson's disease incidence data
as designated by the department. The department may contract with an
agency, including, but not limited to, a health systems agency,
single-county health department, multicounty health department
grouping, or nonprofit professional association, representing a
designated Parkinson's disease reporting region for the purposes of
collecting and collating Parkinson's disease incidence data.
(c) The director shall designate Parkinson's disease as a disease
required to be reported in the state or any demographic parts of the
state in which Parkinson's disease information is collected under
this section. All cases of Parkinson's disease diagnosed or treated
in the reporting area shall thereafter be reported to the
representative of the department authorized to compile the Parkinson'
s disease data, or any individual, agency, or organization designated
to cooperate with that representative.
(d) (1) Any hospital or other facility providing therapy to
Parkinson's disease patients within an area designated as a Parkinson'
s disease reporting area shall report each case of Parkinson's
disease to the department or the authorized representative of the
department in a format prescribed by the department. If the hospital
or other facility fails to report in a format prescribed by the
department, the department's authorized representative may access the
information from the hospital or the facility and report it in the
appropriate format. In these cases, the hospital or other facility
shall reimburse the department or the authorized representative for
its costs to access and report the information.
(2) Any physician and surgeon, pharmacist, or other health care
practitioner diagnosing or providing treatment for Parkinson's
disease patients shall report each Parkinson's disease case to the
department or the authorized representative of the department except
for those cases directly referred to a treatment facility or those
previously admitted to a treatment facility for diagnosis or
treatment of that instance of Parkinson's disease.
(e) All physicians, hospitals, outpatient clinics, and all other
facilities, individuals, or agencies providing diagnostic or
treatment services to patients with Parkinson's disease shall grant
to the department or the authorized representative access to all
records that would identify cases of Parkinson's disease or would
establish characteristics of Parkinson's disease, treatment of
Parkinson's disease, or medical status of any identified Parkinson's
disease patient. Willful failure to grant access to those records
shall be punishable by a civil penalty of up to five hundred dollars
($500) each day access is refused. Any civil penalties collected
pursuant to this subdivision shall be deposited by the department in
the General Fund.
(f) (1) Except as otherwise provided in this section, all
information collected pursuant to this section shall be confidential.
For purposes of this section, this information shall be referred to
as "confidential information."
(2) The department and any regional Parkinson's disease registry
designated by the department shall use the information to determine
the sources of Parkinson's disease.
(3) Persons with a valid scientific interest who are engaged in
demographic, epidemiological, or other similar studies related to
health who meet qualifications as determined by the department, and
who agree, in writing, to maintain confidentiality, may be authorized
access to confidential information.
(4) The department and any regional Parkinson's disease registry
designated by the department may enter into agreements to furnish
confidential information to other states' Parkinson's disease
registries, federal Parkinson's disease control agencies, local
health officers, or health researchers for the purposes of
determining the sources of Parkinson's disease and evaluating
measures designed to eliminate, alleviate, or ameliorate their
effect. Before confidential information is disclosed to those
agencies, officers, researchers, or out-of-state registries, the
requesting entity shall agree in writing to maintain the
confidentiality of the information, and in the case of researchers,
shall also do both of the following:
(A) Obtain approval of their committee for the protection of human
subjects established in accordance with Part 46 (commencing with
Section 46.101) of Title 45 of the Code of Federal Regulations.
(B) Provide documentation to the department that demonstrates to
the department's satisfaction that the entity has established the
procedures and ability to maintain the confidentiality of the
information.
(5) Notwithstanding any other provision of law, any disclosure
authorized by this section shall include only the information
necessary for the stated purpose of the requested disclosure, used
for the approved purpose, and not be further disclosed.
(6) The furnishing of confidential information to the department
or its authorized representative in accordance with this section
shall not expose any person, agency, or entity furnishing information
to liability, and shall not be considered a waiver of any privilege
or a violation of a confidential relationship.
(7) The department shall maintain an accurate record of all
persons who are given access to confidential information. The record
shall include: the name of the person authorizing access; name,
title, address, and organizational affiliation of persons given
access; dates of access; and the specific purpose for which
information is to be used. The record of access shall be open to
public inspection during normal operating hours of the department.
(8) Notwithstanding any other provision of law, no part of the
confidential information shall be available for subpoena, nor shall
it be disclosed, discoverable, or compelled to be produced in any
civil, criminal, administrative, or other proceeding, nor shall this
information be deemed admissible as evidence in any civil, criminal,
administrative, or other tribunal or court for any reason.
(9) Nothing in this subdivision shall prohibit the publication by
the department of reports and statistical compilations that do not in
any way identify individual cases or individual sources of
information.
(10) Notwithstanding the restrictions in this subdivision, the
individual to whom the information pertains shall have access to his
or her own information in accordance with Chapter 1 (commencing with
Section 1798) of Title 1.8 of the Civil Code.
(g) For the purpose of this section, "Parkinson's disease" means a
chronic and progressive neurologic disorder resulting from
deficiency of the neurotransmitter dopamine as the consequence of
degenerative, vascular, or inflammatory changes in the area of the
brain called the basal ganglia. It is characterized by tremor at
rest, slow movements, rigidity of movement, droopy posture, muscle
weakness, and unsteady or shuffling gait.
(h) Nothing in this section shall preempt the authority of
facilities or individuals providing diagnostic or treatment services
to patients with Parkinson's disease to maintain their own
facility-based Parkinson's disease registries.
