Resources provided by Swiss Re have been deployed to support Natalia Sanz, the CONCORD Programme Manager, since February 2012. The University of Kentucky has provided a contract for US$192,000. The US Centers for Disease Control (CDC) has provided a competitively awarded contract for US$350,000 a year for three years from June 2012, via an Inter-Agency Agreement with the US National Cancer Institute (NCI).
Three Swiss research organisations were represented at the CONCORD Management Committee meeting in London in December 2011 (Swiss Cancer League, Swiss Cancer Research Foundation and the National Institute for Cancer Epidemiology and Registration: NICER). A funding decision is expected in June 2012.
A funding application has been made to the Ulster Cancer Foundation, in collaboration with the Northern Ireland Cancer Registry. An application is being prepared for Cancer Research UK (22 June). A meeting was held in Lyon on 25 May to pursue collaboration with IARC. If confirmed, the provisional agreements reached should help with the funding application to Cancer Research UK. Other avenues are being explored in Australia and Canada.
Prof Coleman visited Washington DC in March 2012 to meet Dr Ted Trimble, Director of the NCI Center for Global Health, together with Dr Marcus Plescia, the Director of CDC’s Division of Cancer Prevention and Control, and Dr Brenda Edwards, NCI (also CONCORD Steering Committee). Dr Trimble agreed that the Centre for Global Health would endorse CONCORD, collaborate in the scientific programme, and help to leverage funding from other agencies, in collaboration with CDC.
Further endorsements for CONCORD have been received from the Danish Cancer Society (DCS), the Spanish Cancer Society (AECC), the European CanCer Organisation (ECCO) and the North American Association of Central Cancer Registries (NAACCR).
Handling a huge volume of data from cancer registries around the world in a robust and comparable manner is a major challenge. To help us do this, we have asked each registry to provide a detailed set of standardised information about their registration practices that relate directly to cancer survival. We adapted the questionnaire used for the first CONCORD study, and distributed it to more than 350 cancer registries worldwide, as part of a renewed invitation to participate. The questionnaire can be completed on-line, or as a Word file, or submitted by post. We will shortly issue the call for data.
So far, 140 registries in 50 countries have registered to participate in CONCORD-2.
We have set up the first few pages of a CONCORD website. After entry of the cancer registry name and e-mail address, the site provides access to the protocol, annexes and questionnaire. It also gives access to an article in the International Journal of Cancer on why cancer registries should provide complete dates (day, month and year) for cancer survival analyses (epub ahead of print DOI: 10.1002/ijc.27545).
Handling partial dates in survival analysis causes problems for quality control of the data and the analysis of short-term survival. It is becoming more difficult for some cancer registries to provide full dates because of concerns about confidentiality. In some cases, local laws or regulations actually prohibit this. Where provision of full dates is possible, this article should help cancer registries obtain permission to supply full dates for international survival analysis.
We will shortly:
- Recruit a Lecturer, a Research Fellow and a Data Manager, in addition to the existing Programme Manager (Natalia Sanz)
- Issue the call for participating cancer registries to submit their datasets
- Analyse responses to the questionnaires on cancer registration practice
- Refine the data preparation routines and develop the planned outputs
A full meeting of the CONCORD Working Group will be held on 20-21 September 2012, immediately after the International Association of Cancer Registries (IACR) conference in Cork, Ireland. This meeting will bring together representatives of many cancer registries participating in the CONCORD programme.
We have provided full fellowships to enable 35 scientists from cancer registries in developing countries to attend both meetings. This will be a great opportunity to generate enthusiasm for the study and to discuss methodological issues at an early stage.
We have recently presented the CONCORD study at four international meetings; three more are planned in 2012:
- North American Association of Central Cancer Registries, Lexington KY (USA), June 2011
- National Cancer Registration Programme, Guwahati, Assam (India), November 2011
- Group for the Registration and Epidemiology of cancer in Latin Language countries (GRELL), Porto (Portugal), May 2012
- North American Association of Central Cancer Registries, Portland OR (USA), June 2012
- CDC National Cancer Congress, Washington DC (USA), 20-23 August 2012
- UICC World Cancer Congress, Montreal (Canada), 27-30 August 2012
- National Cancer Registration Programme, Trivunananthapuram, Kerala (India), December 2012
CONCORD Steering Committee member Dr Sohee Park (Korea) has been appointed to a biostatistics professorship at Yongsei University in Seoul.
We will issue further bulletins as soon as we have additional news!
Michel Coleman and Natalia Sanz
On behalf of the CONCORD Steering Committee