Newsletter No. 4 – 28 August, 2012

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Funding and resources

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). Cancer Institute New South Wales has agreed to deploy a half-time analyst for the lifetime of the programme.

The Canadian Partnership Against Cancer is likely to deploy CDN$200,000 to support the programme from September 2012. Cancer Focus Northern Ireland is likely to deploy an experienced cancer survival analyst to London for one year from October 2012.

An application for £2M over four years is under peer review with Cancer Research UK. A decision will be available in November 2012.

Joint applications to the Milbank Foundation and the Susan G Komen Foundation are under discussion with CDC.

We will shortly:

  • Recruit a Lecturer, Research Fellow and 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

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Prof Coleman visited Washington DC in March 2012 to meet Dr Ted Trimble, Director of the NCI Center for Global Health, with Dr Marcus Plescia, 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.

CONCORD has been endorsed by many national and international organisations, including the WHO Regional Office for Europe (Copenhagen); the Organisation for Economic Co-operation and Development (Paris); the International Atomic Energy Agency (Vienna); the Union for International Cancer Control (Geneva); the Canadian Association of Provincial Cancer Agencies (Toronto); Members of the European Parliament Against Cancer (Brussels); the Danish Cancer Society (Copenhagen); the Spanish Cancer Society (Madrid); the European CanCer Organisation (Brussels); the European Cancer Leagues (Brussels); the North American Association of Central Cancer Registries (NAACCR), and the US National Cancer Institute’s Center for Global Health (Washington).

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So far, more than 180 population-based cancer registries in 55 countries have registered to participate in CONCORD-2 by supplying data for analysis.

Handling a huge volume of data from cancer registries around the world in a robust and comparable manner is a major challenge. We have asked each registry to provide a detailed set of standardised information about their registration practices that relate directly to cancer survival. The questionnaire can be completed on-line, or as a Word file, or submitted by post. We will shortly issue the call for data.

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 our recent 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.

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CONCORD Working Group meeting – 35 travel fellowships

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 low- and middle-income countries to attend both meetings. This will be a great opportunity to generate enthusiasm for CONCORD and to discuss methodological issues at an early stage.

We have presented the CONCORD study at five international meetings; two 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

Michel Coleman and Natalia Sanz
On behalf of the CONCORD Steering Committee

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