Overview of Belgian Cancer Registry and Research Initiatives

Belgium's national cancer registry, established in 2004, covers a population of 11 million with data available since 2004. The registry includes specific legislation and authorization for data use, ensuring quality data collection and longitudinal follow-up. Various data sources feed into the registry, including oncology departments, pathology labs, and insurance reimbursement data. The registry captures detailed information on cancer incidence, treatment, mortality, and quality of care. Research initiatives focus on linking registry data with administrative data, evaluating care quality, and measuring indicators across cancer types. Future projects aim to expand data collection on specific cancer types and comorbidities.

• Belgian Cancer Registry
• Cancer Incidence
• Quality of Care
• Research Initiatives
• Data Collection

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1. BELGIAN CANCER REGISTRY Meeting 17/01/2014, Utrecht

2. Summary Belgium National Coverage since 2004, 11 Mio pop o Incidence 2004-2011 available o Flemish Region (northern part) since 1999 2 Councils: General board and Scientific board Specific legislation dec 2006: Belgian Cancer Registry o Authorisation to use the national number (patient ID) Quality of the data, linkage, longitudinal follow-up o Linkage autorisation Clinical data and medical claims/reimbursement data (+drugs) (SES) (Geographic - statistical sector) | 2 11-10-2024

3. Data flow Belgian Cancer Registry Dataflow & sources Oncology, Radiotherapy depts, Haematology, Paediatry Pathology labs Multidisciplinary team meeting data File specimens + protocol Health Insurances + reimbursement data reimb. drugs (5 years) Death cert Cancer Registry National Registry Vital status/ death/

4. Cancer registration: data set Date of incidence Basis of diagnosis Topography ICD-O3 Morphology and behaviour ICD-O3 Differentiation grade cTNM and pTNM Overview treatment (given and planned) WHO performance score Nomenclature: diagnostic procedures, therapy, drugs Mortality: causes of death No specific recurrence data, no data on comorbidity | 4 11-10-2024

5. Belgian Cancer Registry Clinical db registration projects Cancer registration Cyto- histopathology data base Virtual Tumour bank and BBMRI.be Evaluation quality of care Evaluation screening programs Descriptive epidemiology

6. Longkanker Vrouwen 2004 2005 2006 2007 2008 2009 2010

7. Research: Quality of Care in Oncology Cancer Registry data linked with administrative data Use of all reimbursed drugs (chemotherapy, immunotherapy, targeted ) GCP: Cancer Registry, Health Insurances, Health Care knowledge Center, College of Oncology EB Guidelines => measuring quality indicators + individual feedback Rectum, breast, testis, stomach, esophagus Near future: lung, head and neck, prostate Thyroid diseases: Benign-malignant: diagnostic/medical/surgical procedures Future: Comorbidity? 7

8. Health Insurances: Administrative Data >98% of the Belgian population (11Mio inhab) 7 health insurances Data => national: Intermutualistic Agency (IMA) Close collaboration with the Belgian Cancer Registry Structured information, start 2003 Diagnostic procedures Surgery, Radiotherapy, Chemotherapy Pathology All reimbursed drugs, materials National code - ATC - date generic or brand name no dose 8

9. Health Insurances: Interests and future HTA Health Insurances, Health Care Knowledge Center Example: Lung cancer: Costs of advanced/metastatic NSCLC in Belgium following 1st-line treatment failure (crizotinib) 9

10. Global limitations >98% affiliated Only reimbursed acts and drugs available Sponsored clinical trials/research Financial objectives of the administrative db Misclassification Timeliness <> prospective registration Medical act code linked to the patient not to diagnosis ! multiple tumours Time frames used (cut off) Surgical acts: not always possible to distinguish between therapeutic and diagnostic interventions 10

11. Specific limitations Head and neck: total number Radiotherapy: start end date Sarcoma: other therapy 11

12. Developing and measuring a set of process and outcome indicators for breast cancer. Stordeur S, Vrijens F, Devriese S, Beirens K, Van Eycken E, Vlayen J. The Breast 2012; 21 253-260 Effect of hospital volume on processes of care and 5-year survival after breast cancer: A population-based study on 25 000 women. Vrijens F, Stordeur S, Beirens K, Devriese S, Van Eycken E, Vlayen J. The Breast. 2012 Jun; 21(3): 261-6 Regional Variation in Thyroid Cancer Incidence in Belgium Is Associated With Variation in Thyroid Imaging and Thyroid Disease Management Van den Bruel A, Francart J, Dubois C et al. J Clin Endocrin Metab. First published ahead of print August 21, 2013 as doi:10.1210/jc.2013-1705 Patient socioeconomic determinants of the choice of generic versus brand name drugs in the context of a reference price system: evidence from Belgian prescription data. Farfan-Portet MI, Van de Voorde C, Vrijens F, Vander Stichele R. Eur J Health Econ. 2012 Jun;13(3):301-313