WP-5 on Cancer registry indicators

WP-5 is led by Renée Otter (Comprehensive Cancer Centre Northern-Netherland - IKN).

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. Update of the survey was presented at IACR 2010 in Japan).

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.

Greece and Luxembourg
WP-5 assisted the two EU countries without a Cancer Registry in developing one. WP-5 helped Ministries of Health in Luxembourg and Greece with scientific support in the development of a quality and sustainable CR in line with EU recommendations. Scientific Meetings, Ministerial Meetings, Training course (for Greece CR) and supporting networks were organised throughout the project. Since February 2012, the two countries seem to have a functioning Cancer Registry.

Final material

Cancer Registry qualitative questionnaire - Report
Cancer Registry promotion in Greece
Cancer Registry promotion in Luxembourg

Meetings

Domain	Date	Place	Report
Luxembourg Cancer registry discussion	05-05-2011	Luxembourg (LUX)
Luxembourg Cancer registry discussion	21-02-2011	Amsterdam (NL)
WP-5 questionnaire discussion	08-06-2010	Phone meeting	-
WP-5 questionnaire discussion	05-11-09	Amsterdam (NL)	-
Training course for Greek cancer registry operators	21/25-09-09	Groningen (NL)
WP-5 questionnaire discussion	25-08-09	Eindhoven (NL)	-
WP-5 questionnaire discussion	08-04-09	Amsterdam (NL)	-
WP-5 activity discussion	10-03-09	Amsterdam (NL)	-
WP-5 questionnaire discussion	27-02-09	Lyon (F)	-

Original Material

Cancer Registry qualitative questionnaire - Protocol
Cancer Registry qualitative questionnaire - Questionnaire