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The Cancer Registry of Norway Jan F Nygård Head of the IT-department Background > Population-based cancer registry with national coverage > 150 employees > Compulsory reporting of cancer cases since 1951 from the clinical community > Personal identification number > Correct coding of multiple primary tumours > Follow up of patients for survival analysis > Correct assessment of the denominators for cancer rates through the population database > Linkage with other sources for comparisons between groups Legislation > The Cancer Registry may without consent contain data relating to persons who have or have had cancer, precancerous conditions, or benign tumours in the central nervous system: > > > > > > > > name and personal identity number address and municipality of residence the site of origin of the cancer morphological diagnosis spread at the time of diagnosis metastases relapses basis for diagnosis (imaging diagnostics, histopathological examination, cytological material, other type of examination) > cancer treatment received by the data subject (patient), indications and contra-indications for treatment, method of treatment, as well as any complications or side-effects > date and cause of death Organisation Research at the Cancer Registry Birth Markers Prevention Janus biobank Death Cancer diagnose Symptoms Screening Screeningprograms for breastand cervical cancer Disease progression Diagnostic Treatment investigations Incidence registry Curative Palliative Clinical registries for selected cancers > Number of scientific papers published in 2009: 88 Long term effects Long term surveillance Cancer registration in Norway Pathology reports Death certificates Clinical notifications Hospital patient administrative systems The Main database (since 1953) > Number Patients: 1 222 602 > Number of diagnoses: 1 496 421 > Number of notifications: 3 612 896 > Number of new cases 2009: 27 520 > Data quality (2001-05) > 98.8 % complete for all types of cancers combined > 93,9 % morphologically verified > 0,9 % obtained from death certificate only (DCO). > Basis for the yearly publication “Cancer in Norway” Trends, all cancer types combined Clinical quality registries > The main database contains data related to the initial diagnosis > Several additional clinical databases connected to the main database are either already established or will soon be, with a focus on treatment and longitudinal data > > > > > > > > Nordic Solid Tumors in children (NOPHO) database Colorectal cancer database Prostate cancer database Lung cancer database Ovarian cancer database Breast cancer database Malignant melanoma database Lymphoma database The integrated model for national clinical registries > Clinical registries have been established as an integrated part of the Cancer Registry of Norway for > > > > Colorectal cancer Prostate cancer Malignant melanoma Breast cancer Clinical and descriptive research > Projects related to the different clinical registries > diagnostics, treatment and outcome quality > evaluation of cancer care > Time trend studies > Prediction of future cancer burden > Annual report: Cancer in Norway 2007: “Long-term survival of cancer patients in Norway 1953-2006” Example: Treatment of rectum cancer Proportion of local recurrence 1988 2004 28 % 9% Key success factors: > Introduction of new operation method (TME) with nationwide training > Establishment of a clinical registry for rectum cancer within the Cancer Registry of Norway (CRN) > Close collaboration between CRN and the clinical community > Feedback to the hospitals on their results > Centralizing treatment Use of MR in medical investigation by calendar time 100% 90% 80% 70% 60% Ikke angitt 50% MR ikke utført MR utført 40% 30% 20% 10% 0% 2001 2002 2003 2004 2005 2006 Screening-related research > Evaluation of the mammography programme: mortality changes, biological features, health service logistics, quality of diagnostics and treatment > Vaccination against HPV infection of the cervix > Evaluation of the cervix screening programme: logistics, compliance, tests > Colorectal cancer screening: adenoma/cancer, life-style, quality of life, health economy, health services, laboratory studies Important events in life, as seen by a cancer epidemiologist Traditional cancer registration Focus of primary diagnosis K: Clinical report P: Patology report D: Death certificate Principles of registration > > > > 1st hand information Independence of information Collect information as they occur Coding and classification adhere to agreed international guidelines With regard to comparability, completeness, validity and timeliness Traditional cancer registration (plus) Focus on time of primary diagnosis K: Clinical report P: Patology report D: Death certificate N: Patient register report So what is the difference between a traditional cancer register and a clinical/quality register? Cancer registration Clinical / quality - registries Diagnosis Time of relapse Start of primary treatment End of primary treatment Time of metastatic disease D: Diagnostic report S: Surgery report R: Radiotherapy C: Chemotherapy report H: Hormonal therapy report P: Patology report D: Death certificate N: Patient register report Consequences for clinical and health services research > Quality indicators > Are patients diagnosed according to national guideslines > Are patients treated according to national guideslines > Regional differences? > Comparisons of treatment regiments Diagnosis Start of primary treatmentEnd of primary treatment Time of relapse Time of metastatic disease