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Supporters urge creation of state Parkinson’s registry to track cases, guide research and services
Summary
Senate Bill 718 would direct the Oregon Health Authority to build a Parkinson’s disease registry with opt-out provisions and an advisory committee; patients, advocates and providers told the Senate Committee on Health Care that a registry would quantify prevalence, identify hotspots and help recruit research participants.
Oregon advocates, patients and clinicians told the Senate Committee on Health Care on Jan. 28 that Senate Bill 718 would establish a state Parkinson’s disease registry to measure incidence and prevalence, identify geographic and occupational clusters, and inform research and services.
Why it matters: Testifiers said Oregon lacks a centralized count of people with Parkinson’s, making it difficult to target services, design prevention studies and recruit participants for clinical trials. Supporters pointed to registries in other states and urged Oregon to act to support research, care planning and equitable service delivery.
Sen. Chris Gorsek, the bill sponsor, told the committee that Parkinson’s is a growing public-health challenge and that Oregon can “set the standard” by creating a registry and partnering with groups such as the Michael J. Fox Foundation and Parkinson’s Resources of Oregon. He said the registry would include opt-out protections and an advisory committee to guide implementation.
Kevin Mansfield, who has lived with Parkinson’s for 24 years and serves as a public-policy ambassador for the Michael J. Fox Foundation, said a registry would establish accurate statewide counts, help identify hotspots and support research into environmental and occupational risk factors. “A registry would provide invaluable insights,” he said.
Katrina Call, executive director of the Bridal Grant Foundation, described registries as tools to identify gaps in services and to connect people to proven, nonpharmacologic interventions—exercise, diet and supportive community programs—that can delay disability progression. Family members and patients who testified said registry data would help target scarce neurologist resources and clinical trials to underserved areas.
Several witnesses provided prevalence and cost figures during testimony: supporters said more than 25,000 Oregonians currently live with Parkinson’s disease and that about 90,000 people are diagnosed annually in the U.S.; national annual costs of Parkinson’s care were cited at roughly $52 billion. Witnesses also noted that fewer than 30% of Parkinson’s cases are directly attributable to genetic causes, emphasizing the need to study environmental and occupational factors.
The bill would direct the Oregon Health Authority to design the registry or contract for one, begin data collection by July 1, 2026, allow patients to opt out, and create a Parkinson’s disease registry advisory committee. Supporters named the Michael J. Fox Foundation, Parkinson’s Resources of Oregon and the Bridal Grant Foundation among allies; they also described outreach to medical associations and potential funders to support implementation.
The committee closed the public hearing on SB 718; no committee action or vote was recorded in the transcript.
