National cancer registry luxembourg
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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

National Cancer Registry Luxembourg

EUROCHIP-3 Meeting

Ispra, 27th February 2012

Olivier Collignon, PhD,

Sophie Couffignal, MD,

CRP-Santé


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.

Context (1)


Context 2

Minister of Health decided to implement a NCR

The work was launched the 14th July 2011 with the 1st Steering Committee

Context (2)


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

Objectives of the NCR


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.

Eligible cases


Coverage population

People living in Luxembourg at diagnosis.

People living abroad but diagnosed and/or treated in Luxembourg.

Coverage population


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 7th Edition)

Collected data (1)


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.

Collected data (2)


Data sources main sources

National Health Laboratory (pathological reports)

Hospital-based Cancer Registries (5 hospitals)

Multidisciplinary Consulting Meeting (reports)

National Centre of Radiotherapy

Data sources: main sources


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

Data sources: further sources


Funding

Ministry of Health within the frame of a convention with the CRP-Santé

Grants for research projects

Funding


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.

Work in progress: at hospital level


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 .

Work in progress: at NCR level


Work in progress at ncr level1

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 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.

Legal and ethical aspects


Calendar

From April to November 2012: initial training of the Data Managers Cancer

July 2012: starting of NCR data collection

Calendar


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