National Cancer Registry Luxembourg. EUROCHIP-3 Meeting Ispra, 27 th February 2012. Olivier Collignon , PhD, Sophie Couffignal, MD, CRP-Santé. Luxembourg: one of the last European countries without National Cancer Registry (NCR).
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National Cancer Registry Luxembourg
Ispra, 27th February 2012
Olivier Collignon, PhD,
Sophie Couffignal, MD,
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.
Minister of Health decided to implement a NCR
The work was launched the 14th July 2011 with the 1st Steering Committee
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
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.
People living in Luxembourg at diagnosis.
People living abroad but diagnosed and/or treated in Luxembourg.
Tumour characteristics: clinical and histological features, diagnosis and treatment related,
Follow up status.
International coding standards will be used (ICD-O-3, TNM 7th Edition)
Basic dataset will be collected for all new cases.
Expanded dataset will be collected for:
National Health Laboratory (pathological reports)
Hospital-based Cancer Registries (5 hospitals)
Multidisciplinary Consulting Meeting (reports)
National Centre of Radiotherapy
National screening programs
Registry of civil status
Nation-wide health insurance system
Department responsible for authorizing treatment abroad
Ministry of Health within the frame of a convention with the CRP-Santé
Grants for research projects
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.
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 .
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.
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.
From April to November 2012: initial training of the Data Managers Cancer
July 2012: starting of NCR data collection