WP-5 on Cancer registry indicators

WP-5 has a double aim: to continue the Cancer Registry (CR) promotion in countries without CRs (i.e. Greece and Luxembourg) and to identify, through qualitative questionnaires and forum discussion amongst European CRs, where adequate data for the production of cancer indicators is lacking, which kind of data is lacking, and which are major problems reported by the CRs.

Cancer Registry qualitative questionnaire
This work package aims to improve population-based cancer registration of cancer indicators, in particular “stage at diagnosis” (extension of tumour at diagnosis), “cancer treatment delay” and “compliance with cancer guidelines”. To promote the collection of these indicators it is necessary to get insight in the present situation in all European cancer registries. WP-5 addressed the following questions:

• Which European cancer registries routinely collect data items for these cancer indicators
• Which European cancer registries do not collect data items for these cancer indicators and what are the reasons for not collecting these items (lack of budget, staff, data sources, legislation)
• What is the contribution of European cancer registries to the description of cancer burden or evaluation of cancer control.

To answer the above mentioned questions a specific for this purpose developed questionnaire will be addressed to all European cancer registries (see the protocol). The questionnaire is distributed to the European Cancer Registries. A pilot of the questionnaire has been conducted with 10 Cancer Registries and the ENCR Steering Committee. The questionnaire asks about contact details of the registry (to make it possible to clearify some answers if necessary), registry description, conditions of cancer registration, funding of cancer registration, data sources, registration criteria, screening, diagnosis, coding topography and morphology, tumour items (i.e. stage at diagnosis), treatment items (i.e. date of diagnosis), follow-up items, role in guideline evaluation and registry output. Finally we ask the CR for permission to share the data with the public or only with ENCR members.

The questionnaire is developed for the EUROCHIP-3 project. To prevent duplication of effort, the content of the questionnaire has been discussed with other parties like the ENCR (European Network of Cancer Registries) and the EUROCOURSE project . To reduce the workload for the CR some questions already asked for other projects (ENCR CI5 questions) will be filled out by default. The updated answers will also be shared with the ENCR. The EUROCOURSE project expressed interest in some questions. The answers will be shared after permission by the CR.

Greece and Luxembourg
The Hellenic Cancer Registry was charged by the Ministry of Health to the Hellenic Centre for Diseases Control and Prevention (KEELPNO) under the law no 3370/2005 but initiated activity on June 13, 2008 within the funding system of the Hellenic Cancer Society. A training programme was formed by Mrs Margery Duin, with specific aim to assist in the development of a Cancer Registry (CR) in Greece. The course took place at IKNO (Groningen) from 21-24 September 2009 and was attended by three members of staff of the Hellenic Cancer Registry at the Hellenic Centre for Diseases Control and Prevention (HCC-KEELPNO). The three participants were Lia Tzala, Elisa Ferekydou and Gerasimos Gerolymatos.

The course was tailor-made for the HCC-KEELPNO staff needs and preferences to share the knowledge and experience gained in the Netherlands. During the course, discussions were made with the trainers and speakers on the various difficulties faced by HCC since it started operating in KEELPNO, together with possible solutions. Specifically, the following topics were covered:

• The structure of the cancer reporting system in the Netherlands and the way it started and progressed over the years, including the development and management of clinical networks
• Description of the health system in the Netherlands and the way this aids reporting
• Description of cancer registration in the Netherlands, including electronic database demonstration
• Linkage of cancer registry database with other databases and identification of duplicate records
• Discussions and exercises on coding issues using ICD-O-3
• Discussions and exercises on TNM classifications (cTNM and pTNM)
• Description and discussions on the coding manual used by IKNO
• Brief description of the running screening programmes in the Netherlands
• Guidelines on confidentiality

WP-5 members are in contact with the Ministry of Health in Luxembourg to provide support in the decision making processes necessary for the activation of a National Population based Cancer Registry in Luxembourg. Currently the CRP-Santé is mandated by the Ministry of Health to implement a national network of hospital-based cancer registries (the first step will be focused on breast and lung cancers).