Newsletter No. 2 – 30 May, 2012

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Resources provided by Swiss Re have been deployed to support Natalia Sanz, the CONCORD Programme Manager, since February 2012. We have received a contract for US$192,000 from the University of Kentucky. We will now receive a competitively awarded contract from the US Centers for Disease Control (CDC) for a further 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 was expected on 23 March, but this has been deferred until June 2012.

We have submitted a grant application to the Spanish Cancer Society (Aecc) for a CONCORD high-resolution study in Spain. This would allow secondment of a Spanish scientist to London for an extended stay. A decision is expected in May 2012. An application has been made to the Ulster Cancer Foundation for a similar arrangement, in collaboration with the Northern Ireland Cancer Registry. Other avenues are being explored.

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 NCI would endorse CONCORD, collaborate in the scientific programme, and help to leverage funding from other agencies, in collaboration with CDC.

A meeting was held in Lyon on 25 May to pursue collaboration with IARC. If confirmed, the provisional agreements reached should help with re-application for funding to Cancer Research UK. The deadline is 22 June.

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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. For this purpose, we have 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.

More than 130 registries in 45 countries have already registered to join the CONCORD-2 study.

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 at least possible, this article should help cancer registries to obtain local permission to supply full dates for CONCORD.

We will shortly be able to:

  • Recruit a Lecturer, a Research Fellow and a Data Manager, in addition to the existing Programme Manager (Natalia Sanz)
  • Issue a 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

We have arranged a full meeting of the CONCORD Working Group, to follow the International Association of Cancer Registries (IACR) conference in Cork, Ireland, in September 2012. This meeting will bring together representatives of most 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 three international meetings; four more international presentations 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), 2-8 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

We are delighted that Dr Ambakumar Nandakumar, Director of the National Cancer Registration Programme of India, has joined the CONCORD Steering Committee.

We will issue further bulletins as soon as we have additional news!

Michel Coleman
Natalia Sanz
On behalf of the CONCORD Steering Committee

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