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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…
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