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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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.Context (1)
National Cancer Registry (NCR).Minister of Health decided to implement a NCR
The work was launched the 14th July 2011 with the 1st Steering CommitteeContext (2)
Descriptive epidemiological surveillance National Cancer Registry (NCR).
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 resourcesObjectives of the NCR
All new cases of malignant cancer ( National Cancer Registry (NCR).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.Eligible cases
People living in Luxembourg at diagnosis. National Cancer Registry (NCR).
People living abroad but diagnosed and/or treated in Luxembourg.Coverage population
Patient characteristics, National Cancer Registry (NCR).
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)Collected data (1)
Basic dataset will be collected for all new cases. National Cancer Registry (NCR).
Expanded dataset will be collected for:
Haematological malignancies.Collected data (2)
National Health Laboratory (pathological reports) National Cancer Registry (NCR).
Hospital-based Cancer Registries (5 hospitals)
Multidisciplinary Consulting Meeting (reports)
National Centre of RadiotherapyData sources: main sources
National screening programs National Cancer Registry (NCR).
Registry of civil status
Nation-wide health insurance system
Department responsible for authorizing treatment abroad
Private laboratoriesData sources: further sources
Grants for research projectsFunding
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.Work in progress: at hospital level
Finalization of the expanded datasets. or implementation (software, dataset)
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 .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.Work in progress: at NCR level
Legal framework by a “Réglement Grand-Ducal” registries and NCR.
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.Legal and ethical aspects
From April to November 2012: initial training of the Data Managers Cancer
July 2012: starting of NCR data collectionCalendar