Establishes the Parkinson's disease registry.

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83rd OREGON LEGISLATIVE ASSEMBLY--2025 Regular Session
Senate Bill 718
Sponsored by Senator GORSEK, Representative RUIZ (Presession filed.)
SUMMARY
The following summary is not prepared by the sponsors of the measure and is not a part of the body thereof subject
to consideration by the Legislative Assembly. It is an editor’s brief statement of the essential features of the
measure as introduced. The statement includes a measure digest written in compliance with applicable readability
standards.
Digest: The Act would create the Parkinson’s disease registry. (Flesch Readability Score: 61.2).
Establishes the Parkinson’s disease registry.
Takes effect on the 91st day following adjournment sine die.
A BILL FOR AN ACT
Relating to Parkinson’s disease registry; and prescribing an effective date.
Be It Enacted by the People of the State of Oregon:
SECTION 1.
Definitions. (1) As used in sections 1 to 6 of this 2025 Act:
(a) “Clinical laboratory” has the meaning given that term in ORS 432.500.
(b) “Health care facility” has the meaning given that term in ORS 432.500.
(c) “Parkinsonisms” means related conditions that cause a combination of the movement
abnormalities seen in Parkinson’s disease, such as tremor at rest, slow movement, muscle
rigidity, impaired speech or muscle stiffness, which often overlap with and can evolve from
what appears to be Parkinson’s disease, and that include multiple system atrophy, dementia
with Lewy bodies, corticobasal degeneration and progressive supranuclear palsy.
(d) “Parkinson’s disease” means a chronic and progressive neurologic disorder that re-
sults from deficiency of the neurotransmitter dopamine as the consequence of specific de-
generative changes in the area of the brain called the basal ganglia and that is characterized
by tremor at rest, slow movement, muscle rigidity, stooped posture and unsteady or shuffling
gait.
SECTION 2.
Parkinson’s disease registry; advisory committee; rules. (1) The Oregon
Health Authority shall establish a registry system to collect data on the incidence and pre-
valence of Parkinson’s disease in Oregon and other related data.
(2) A health care facility, licensed health care practitioner or clinical laboratory, diag-
nosing or providing treatment to patients with Parkinson’s disease or related Parkinsonisms
shall report each case of Parkinson’s disease or related Parkinsonisms to the authority in a
format prescribed by the authority.
(3) The authority may contract with a public or private third party to:
(a) Operate or maintain the statewide registry; and
(b) Fulfill the authority’s duties under sections 1 to 6 of this 2025 Act.
(4) The authority shall adopt rules establishing a Parkinson’s Disease Registry Advisory
Committee to assist in the development and implementation of the registry, determine what
data shall be collected and generally advise the authority on issues related to carrying out
the duties described in sections 1 to 6 of this 2025 Act. Membership of the advisory commit-
NOTE: Matter in boldfaced type in an amended section is new; matter [ italic and bracketed] is existing law to be omitted.
New sections are in boldfaced type.
LC 1868
SB 718
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tee must include a neurologist, a movement disorder specialist, a primary care physician, a
physician informaticist, a patient diagnosed with Parkinson’s disease, a person who is
knowledgeable about public health and safety, a population health researcher familiar with
registries and a Parkinson’s disease researcher and other individuals the authority deems
necessary. The advisory committee shall meet at least biannually.
(5) All patients diagnosed with Parkinson’s disease or related Parkinsonisms shall be
provided a notice in writing and orally regarding the collection of information and patient
data on Parkinson’s disease. Patients who do not wish to participate in the collection of data
under the registry system for purposes of research shall affirmatively opt-out in writing af-
ter an opportunity to review the documents and ask questions. A patient may not be forced
to participate in the registry.
(6) The authority shall establish a system for the collection and dissemination of infor-
mation determining the incidence and prevalence of Parkinson’s disease and related
Parkinsonisms.
(7) Diagnoses of Parkinson’s disease and related Parkinsonisms shall be reported, but the
mere incidence of a patient diagnosis shall be the sole required information for the registry
for any patient who chooses not to participate. For the subset of patients who choose not
to participate, further data may not be reported to the registry.
(8) No later than December 1 of each year, the advisory committee shall submit a report
in the manner provided in ORS 192.245, and may include recommendations for legislation, to
the interim committees of the Legislative Assembly related to health care. The report sub-
mitted under this subsection must include, but is not limited to a summary of the
committee’s findings relating to patients diagnosed with Parkinson’s disease and related
Parkinsonisms.
SECTION 3.
Confidentiality of information. (1) All identifying information regarding in-
dividual patients, health care facilities and practitioners reported pursuant to section 2 of
this 2025 Act shall be confidential and privileged. Except as required in connection with the
administration or enforcement of public health laws or rules, no public health official, em-
ployee or agent shall be examined in an administrative or judicial proceeding as to the ex-
istence or contents of data collected under the registry system for Parkinson’s disease and
related Parkinsonisms established under section 2 of this 2025 Act.
(2) All additional information reported in connection with a special study conducted using
data from the statewide registry established under section 2 of this 2025 Act shall be confi-
dential, privileged and used solely for the purposes allowed under ORS 413.196. Nothing in
this section shall prevent the Oregon Health Authority from publishing statistical compila-
tions relating to morbidity and mortality studies that do not identify individual cases or
prevent use of this data by third parties to conduct research as provided by section 4 of this
2025 Act.
SECTION 4.
Use of confidential data; rules. (1) The Oregon Health Authority shall adopt
rules under which confidential data may be used by third parties to conduct research and
studies for the public good. Research and studies conducted using confidential data from the
statewide registry established under section 2 of this 2025 Act must be reviewed and ap-
proved by the Committee for the Protection of Human Research Subjects established in ac-
cordance with 45 C.F.R. 46.
(2) The authority may enter into agreements to exchange information with other regis-
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tries for patients diagnosed with Parkinson’s disease and related Parkinsonisms to obtain
complete reports of Oregon residents diagnosed or treated in other states and to provide
information to other states regarding the residents of other states diagnosed or treated in
Oregon. Before providing information to any other registry, the authority shall ensure that
the recipient registry has comparable confidentiality protections.
SECTION 5.
Action for damages; license; disciplinary action prohibited for good faith
participation in reporting of data. (1) An action for damages arising from the disclosure of
confidential or privileged information may not be maintained against any person, or the
employer or employee of any person, who participates in good faith in the reporting of reg-
istry data for Parkinson’s disease and related Parkinsonisms in accordance with sections 1
to 5 of this 2025 Act.
(2) A license of a health care facility or practitioner may not be denied, suspended or
revoked for the good faith disclosure of confidential or privileged information in the report-
ing of registry data for Parkinson’s disease and related Parkinsonisms in accordance with
sections 1 to 5 of this 2025 Act.
(3) Nothing in this section shall be construed to apply to the unauthorized disclosure of
confidential or privileged information when such disclosure is due to gross negligence or
willfulmisconduct.
SECTION 6.
No requirement or prohibition regarding operation of separate registry.
Nothing in sections 1 to 5 of this 2025 Act shall prohibit a health care facility from operating
the facility’s own registry for Parkinson’s disease and related Parkinsonisms or require a
health care facility to operate the facility’s own registry for Parkinson’s disease and related
Parkinsonisms.
SECTION 7. Temporary provisions. The Oregon Health Authority shall provide notifica-
tion of the mandatory reporting of diagnoses of Parkinson’s disease and related
Parkinsonisms on the authority’s website and shall also provide that information to associ-
ations representing physicians and hospitals and directly to the boards regulating health care
professionals at least 90 days before the reporting of the information is required.
SECTION 8. Section 7 sunset. Section 7 of this 2025 Act is repealed on January 2, 2027.
SECTION 9. Operative date. (1) Sections 1 to 7 of this 2025 Act become operative January
1, 2026.
(2) The members of the Parkinson’s Disease Registry Advisory Committee shall be ap-
pointed no later than January 1, 2026.
(3) The registry system established in section 2 of this 2025 Act must be operative no
later than July 1, 2026.
(4) The Oregon Health Authority may adopt rules and take any other action before the
operative date specified in subsection (1) of this section that is necessary to enable the au-
thority, on and after the operative date specified in subsection (1) of this section, to under-
take and exercise all of the duties, functions and powers conferred on the authority by
sections 1 to 7 of this 2025 Act.
SECTION 10.
Captions. The section captions used in this 2025 Act are provided only for
the convenience of the reader and do not become part of the statutory law of this state or
express any legislative intent in the enactment of this 2025 Act.
SECTION 11. Effective date. This 2025 Act takes effect on the 91st day after the date on
which the 2025 regular session of the Eighty-third Legislative Assembly adjourns sine die.
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