17-11-2016

Etude "CONCORD" sur la survie des cancers

list below the 11 cancer registries in 8 African countries that are currently registered as participants in the CONCORD study, among more than 230 registries in 60 countries worldwide:

Algeria Annaba Registre du Cancer Annaba ; Algeria Blida Registre du Cancer Blida ; Algeria Sétif Registre du Cancer de Sétif ; Algeria Tlemcen Registre du Cancer Tlemcen ; Gambia National National Cancer Registry, The Gambia, Banjul ; Libya Benghazi Benghazi Cancer Registry ; Mali Bamako Kankou Moussa University ; Mauritius National National Cancer Registy ; Nigeria Ibadan Ibadan Cancer Registry ; Tunisia Nord region Institut Salah Azaiz Registre des Cancers Nord-Tunisien ; Zimbabwe Harare Zimbabwe National Cancer Registry (Capital Harare only)

I attach the main components of the protocol: those on the data specification (Annex 3), the use of full dates (Annex 4), instructions on file transmission (Annex 5) and life tables (Annex 6), and publication and authorship (Annex 9). The full list of annexes is given at the end of the main protocol. As you know, all these documents are available to participating registries by restricted access on the CONCORD website. The CONCORD programme for the global surveillance of cancer survival is now being carried out in direct collaboration with the International Agency for Research on Cancer, with which we have a Memorandum of Understanding on the CONCORD programme. At the present time, we are not in a position to provide financial resources to participating cancerregistries. At the suggestion of Dr Chris Wild, IARC Director, we included a budget line for

£300,000 in the most recent CONCORD funding application, in order to support the work of

Dr Michel P Coleman BA BM BCh MSc FFPH Professor of Epidemiology and Vital Statistics Cancer Research UK Cancer Survival Group Department of Non-Communicable Disease Epidemiology London School of Hygiene & Tropical Medicine Keppel Street, London WC1E 7HT

T +44 (0)20 7612 7849 F +44 (0)20 7436 4230

michel.coleman@lshtm.ac.uk

www.lshtm.ac.uk/eph/ncde/cancersurvival

Improving health worldwide cancer registries in low- and middle-income countries, in particular on the follow-up of cancer patients. We had agreed that these resources would be provided through a subcontract to the Agency, to be used at the Agency’s discretion within the context of the CONCORD programme. Unfortunately, although that grant application was successful, it was only awarded at 50% of what we requested; we were explicitly told that the resources could not be used for capacitybuilding, either through the Agency or in our own programme. We are currently pursuing other initiatives to secure resources for participating cancer registries, but I’m sure I don’t have to tell you that this is not easy. We take very seriously the participation of our collaborators. All participating registries are members of the CONCORD Working Group; the Lancet Oncology paper from the first CONCORD study had 176 authors. All registries world-wide were invited to decide which cancers would be studied in CONCORD-2. The protocol was discussed at the CONCORD Working Group meeting in Cork, Ireland, in September 2012. The meeting was attended by 90 persons from 48 countries; we fully funded the attendance of 35 participants from low- and middle-income countries. The protocol was revised in the light of those discussions. Annex 3 to the protocol (the data definitions) has since been translated from English into Mandarin, Portuguese and Spanish to facilitate participation worldwide: all these versions are on the CONCORD website. We have subsequently held workshops and small group meetings in Argentina, India, Puerto Rico and Russia, teleconferences with various registries and a webinar for all the registries in the US and Canada, to deal with queries about the protocol, data extraction and file submission. All registries will receive reports on adherence of their data to the protocol, as well as exclusion tables and editorial tables showing how their data have been prepared for survival analysis. They will also receive all the life tables for their territory. All Working Group members will see all the results and web annexes of the publications and will have an opportunity to contribute to drafting the articles. There is a formal policy for publication and authorship at Annex 9 of the protocol. The study has received ethical approval from the statutory UK National Information Governance Board (Annex 12.1) and from the National Health Service Research Ethics Committee (Annex 12.2). I have not attached these because they are very large documents, but they are available on the CONCORD website. I trust this will be sufficient information for you and your colleagues in the African Cancer Registry Network to reach a collective decision about participation in the CONCORD programme for the global surveillance of cancer survival. We would of course welcome the participation of registries that I have not listed above. Please let me know if you have any questions. I look forward to hearing from you within the next couple of weeks