1. The Cancer Registry of Norway Jan F Nygård Head of the IT-department

2. 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

3. 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

4. Organisation

5. Death Markers Symptoms Disease progression Prevention Screening Curative Treatment Palliative Long term surveillance Long term effects Diagnostic investigations Screening- programs for breast- and cervical cancer Birth Research at the Cancer Registry Cancer diagnose Janus biobank Clinical registries for selected cancers Incidence registry > Number of scientific papers published in 2009: 88

6. Cancer registration in Norway Pathology reports Death certificatesHospital patient administrative systems Clinical notifications

7. 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”

8. Trends, all cancer types combined

9. 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

10. 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

11. 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”

12. Example: Treatment of rectum cancer 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 Proportion of local recurrence 19882004 28 %9 %

13. Use of MR in medical investigation by calendar time

14. 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

15. Important events in life, as seen by a cancer epidemiologist

16. Traditional cancer registration Focus of primary diagnosis K: Clinical report P: Patology report D: Death certificate

17. 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

18. Traditional cancer registration (plus) Focus on time of primary diagnosis K: Clinical report P: Patology report D: Death certificate N: Patient register report

19. So what is the difference between a traditional cancer register and a clinical/quality register?

20. Cancer registration Clinical / quality - registries Diagnosis Start of primary treatment End of primary treatment Time of relapse 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

21. 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 treatment End of primary treatment Time of relapse Time of metastatic disease