1. National Cancer Registry Luxembourg EUROCHIP-3 Meeting Ispra, 27 th February 2012 Olivier Collignon, PhD, Sophie Couffignal, MD, CRP-Santé

2. Context (1)  Luxembourg: one of the last European countries without National Cancer Registry (NCR).  2008: CRP-Santé was mandated by the Ministry of Health to conduct a feasibility study.  2010 – 2011: European evaluation of the Breast Cancer Screening Program.  May 2011: Meeting with EUROCHIP, CRP- Santé and Ministry of Health.

3. Context (2)  Minister of Health decided to implement a NCR  The work was launched the 14 th July 2011 with the 1 st Steering Committee

4. Objectives of the NCR  Descriptive epidemiological surveillance  Evaluation of public health actions in prevention and screening  Evaluation of patients’ management and quality of care  Support for epidemiological and clinical research  Monitoring of the National Cancer Plan and planning resources

5. Eligible cases  All new cases of malignant cancer (in situ and invasive), except non-melanoma skin cancer.  Benign and with uncertain behaviour tumours of central nervous system and thymus,  T1a urinary bladder,  CIN III cervix, PIN penis.

6. Coverage population  People living in Luxembourg at diagnosis.  People living abroad but diagnosed and/or treated in Luxembourg.

7. Collected data (1)  Patient characteristics,  Tumour characteristics: clinical and histological features, diagnosis and treatment related,  Follow up status.  International coding standards will be used (ICD-O-3, TNM 7 th Edition)

8. Collected data (2)  Basic dataset will be collected for all new cases.  Expanded dataset will be collected for: Breast cancer, Colorectal cancer, Lung cancer, Prostate cancer, Haematological malignancies.

9. Data sources: main sources  National Health Laboratory (pathological reports)  Hospital-based Cancer Registries (5 hospitals)  Multidisciplinary Consulting Meeting (reports)  National Centre of Radiotherapy

10. Data sources: further sources  National screening programs  General practitioners  Death certificate  Registry of civil status  Nation-wide health insurance system  Department responsible for authorizing treatment abroad  Private laboratories

11. Funding  Ministry of Health within the frame of a convention with the CRP-Santé  Grants for research projects

12. Work in progress: at hospital level  Standardization of existing hospital-based cancer registries or implementation (software, dataset)  National-wide standardization of the Multidisciplinary Consulting Meetings (MCM) (software, dataset)  Hiring Data Managers Cancer (= tumour registrars) by hospitals, in charge of collecting and coding data for MCM, hospital-based cancer registry and national cancer registry.

13. Work in progress: at NCR level  Finalization of the expanded datasets.  Implementation of 5 groups of clinicians (Breast, colorectal, prostate and lung cancers, haematological malignancies), in charge of the validation of expanded datasets and expected results, and later, of interpreting the results of clinical indicators from the NCR.

14. Work in progress: at NCR level  Publication of codebooks for hospital- based cancer registries and NCR.  Publication of data extraction protocols from electronic sources to NCR.  Elaboration of NCR standard operating procedures and quality manual.  Training of Data Managers Cancer.

15. Legal and ethical aspects  Legal framework by a “Réglement Grand- Ducal”  Authorization from the National Ethic Committee  Notification at the National Data Protection Commission  Memorandum of understanding between the Ministry of Health, the CRP-Santé and the different data sources.

16. Calendar  From April to November 2012: initial training of the Data Managers Cancer  July 2012: starting of NCR data collection