Newsletter No. 1- 23 March, 2012

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Resources provided by Swiss Re have been deployed to support Natalia Sanz, the CONCORD programme manager, since early February. We have received a contract for US$192,000 from the University of Kentucky to support the programme. We will receive a contract from the US Centers for Disease Control (CDC) within the next month 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).

The three Swiss research organisations that were represented at the Management Committee meeting in December 2011 (Swiss Cancer League, Swiss Cancer Research and the National Institute for Cancer Epidemiology and Registration: NICER) are expected to reach a funding decision on 23 March.

We have submitted a grant application for US$1.2 million to the Spanish Cancer Society (Aecc) for a CONCORD high-resolution study that would be carried out in Spain, but would allow secondment of a Spanish scientist to London for an extended stay: a decision is expected in May. We are pursuing a similar arrangement with the Ulster Cancer Foundation and the Northern Ireland Cancer Registry in Belfast, following a recent trip there. Other avenues are also 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. Dr Trimble agreed that NCI would provide endorsement of CONCORD, direct collaboration in scientific components of the programme, and help with leverage of additional funding from other agencies, in collaboration with CDC.

A meeting has been arranged in Lyon on 25 May to pursue collaboration with IARC. If this is achieved, it would be expected to facilitate a re-application for funding to Cancer Research UK, for which 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. The invitation is conditional upon availability of suitable data, and we will only actually issue the call for data when we have sufficient staff in post.

We have set up the first few pages of a CONCORD website, hosted within the LSHTM website. After entry of the cancer registry name and e-mail address, the site provides access to the full protocol and annexes, to the questionnaire, and to a paper (in press with the International Journal of Cancer) on the rationale for cancer registries to provide complete dates (day, month and year) for cancer survival analyses.

Handling partial dates in survival analysis causes problems, both for quality control and in the analysis of short-term survival. It is increasingly problematic for cancer registries to provide full dates because of misplaced but often firmly held concerns about confidentiality. In some cases, local statutes or regulations actually prohibit this. However, where it is at least possible, this article, together with the UK statutory and ethical approvals, which are included in the protocol, are expected to assist cancer registries to gain local permission to acquire full dates.

When we receive the second large US grant mentioned above, we will be able to:

  • Recruit 4 new posts: a Clinical Senior Lecturer, a Research Fellow or Lecturer and a Data Manager, in addition to the existing Programme Manager (Natalia Sanz)
  • Issue a call for participating cancer registries to submit their datasets
  • Begin to analyse the responses to the questionnaires on cancer registration practice
  • Begin to refine the data preparation routines and develop the planned outputs
  • Arrange a meeting of the full CONCORD-2 Working Group, to bring together representatives of all or nearly all participating cancer registries.

This meeting would be a great opportunity to generate enthusiasm for the study, to discuss a number of methodological issues at an early stage of the programme, and perhaps to run a one-day workshop on cancer survival. We have a provisional plan to do this as a parallel session at the Annual Conference of the International Association of Cancer Registries (IACR) in Cork, Ireland, in September 2012. The proposal has been approved by the local host, the Director of the National Cancer Registry in Ireland, and it has been submitted for consideration by the IACR Scientific Committee.

We presented the CONCORD-2 study at the annual meeting of the North American Association of Central Cancer Registries (NAACCR) in Lexington KY in June 2011, and at the National Cancer Registration Programme (NCRP) of India in Guwahati, Assam, in November 2011. The Director of the NCRP, Dr Ambakumar Nandakumar, has joined the CONCORD Steering Committee. We plan to present CONCORD-2 at four international conferences this year:

  • GRELL (Group for the Registration and Epidemiology of cancer in Latin Language countries), Porto (Portugal), 17-18 May 2012
  • NAACCR (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

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

Michel Coleman

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