Seattle Tumor Registry

Seattle Tumor Registry
Name	Seattle Tumor Registry
Formation	19XX
Type	Medical registry
Headquarters	Seattle, Washington
Region served	King County area

Seattle Tumor Registry is a population-based cancer registry located in Seattle, Washington, established to collect, analyze, and disseminate cancer incidence and survival data. It operates within a network of regional and national institutions and collaborates with hospitals, laboratories, and public health agencies to support surveillance, research, and cancer control activities. The registry's work informs clinicians, epidemiologists, policy makers, and advocacy organizations about cancer patterns and outcomes.

History

The registry was founded in the mid-20th century amid contemporaneous efforts such as Surveillance, Epidemiology, and End Results Program and regional surveillance initiatives driven by institutions like University of Washington, Fred Hutchinson Cancer Center, and Harborview Medical Center. Early collaborations involved pathologists from Seattle Children’s Hospital and oncologists associated with Swedish Medical Center and Virginia Mason Medical Center, following models developed by registries in New York City, Los Angeles County, and Connecticut. Over decades, the registry adapted to reporting standards promulgated by North American Association of Central Cancer Registries and federal guidance linked to National Cancer Institute priorities, integrating technological advances from vendors used by Centers for Disease Control and Prevention-supported programs. Notable phases included transitions tied to electronic health record adoption led by Epic Systems Corporation implementations at regional health systems and methodological shifts influenced by publications from American Cancer Society researchers.

Organization and Governance

Governance combines oversight from local institutions such as University of Washington School of Medicine, King County Department of Public Health, and clinical partners including Seattle Cancer Care Alliance and Fred Hutchinson Cancer Center. Administrative structure aligns with accreditation and reporting frameworks from Commission on Cancer and North American Association of Central Cancer Registries, and funding streams have historically included grants from National Institutes of Health programs and cooperative agreements with Centers for Disease Control and Prevention. Leadership roles have included registry directors with academic appointments at University of Washington, quality assurance specialists trained in standards set by American College of Surgeons, and data managers liaising with legal offices at King County and institutional review boards modeled on Institutional Review Board governance at University of Washington.

Data Collection and Coverage

The registry captures incident cancer cases from hospitals, pathology laboratories, outpatient clinics, and death certificates associated with facilities such as Harborview Medical Center, Swedish Medical Center, and regional pathology services tied to Quest Diagnostics. Data elements follow coding systems promulgated by International Classification of Diseases for Oncology and staging guidelines from American Joint Committee on Cancer and include variables used in studies by National Cancer Institute investigators. Case ascertainment covers residents within defined geographic boundaries overlapping King County and interfaces with statewide systems such as Washington State Department of Health. Electronic reporting stems from interfaces with hospital systems like Epic Systems Corporation and laboratory information systems used by LabCorp. Quality control uses audits against hospital cancer registries at Virginia Mason Medical Center and benchmarking with datasets curated by Surveillance, Epidemiology, and End Results Program.

Research and Publications

The registry supports peer-reviewed research produced in collaboration with investigators at University of Washington, Fred Hutchinson Cancer Center, and public health scholars affiliated with Centers for Disease Control and Prevention and National Cancer Institute. Publications have examined incidence trends, survival disparities, and treatment patterns using methods popularized in journals such as Journal of the National Cancer Institute, Cancer Epidemiology, Biomarkers & Prevention, and The Lancet Oncology. Collaborative studies have linked registry data to biobanks managed by Seattle Cancer Care Alliance and cohort resources associated with Kaiser Permanente and have been cited in policy analyses by American Cancer Society and systematic reviews appearing in Cochrane Library contexts. The registry has contributed to methodological work on staging harmonization and record linkage employed by researchers at Johns Hopkins University and Harvard T.H. Chan School of Public Health.

Impact on Public Health and Cancer Control

Findings from the registry have informed cancer control programs administered by King County Department of Public Health, screening initiatives promoted by American Cancer Society, and clinic-level quality improvement at Swedish Medical Center and Harborview Medical Center. Data from the registry have also supported grant applications to National Institutes of Health and program evaluations for interventions developed with partners such as Fred Hutchinson Cancer Center and Seattle Cancer Care Alliance. Registry-derived evidence has influenced regional prevention campaigns, guiding allocation of resources for tobacco cessation programs linked to Washington State Department of Health recommendations and targeted outreach to populations served by Seattle Indian Health Board and community clinics partnering with Public Health — Seattle & King County.

Legal and Ethical Considerations

Operations follow privacy and confidentiality frameworks under statutes and regulations connected to Health Insurance Portability and Accountability Act of 1996 interpretations used by Centers for Disease Control and Prevention cooperative registries and institutional policies from University of Washington. Ethical oversight includes data use agreements with hospitals such as Virginia Mason Medical Center and review processes modeled on IRB procedures from University of Washington and Fred Hutchinson Cancer Center. Legal considerations encompass reporting mandates aligned with Washington State Department of Health rules, linkage permissions negotiated with entities like Department of Vital Records and compliance with standards endorsed by North American Association of Central Cancer Registries. Debates around data sharing, patient consent, and secondary research use have paralleled national discussions involving National Institutes of Health, Office for Human Research Protections, and advocacy organizations such as Susan G. Komen.

Category:Cancer registries