Newsletter No. 6 – 22 April, 2013

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Call for data

The call for data submissions for CONCORD‐2 was issued on 22 November 2012, shortly after the CONCORD Working Group meeting in Cork, Ireland, during 20‐21 September. The data submission deadline was 31 March 2013, but many registries have requested further time to prepare their data. Please contact concord@lshtm.ac.uk if you anticipate further delay.

The procedures to submit data for CONCORD have been updated. Registries can now choose between two secure file transmission utilities (CONCORD or HyperSend), as well as postal courier services. Detailed information is available with password access on the CONCORD web‐site (Annex 5 to the CONCORD‐2 protocol).

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CONCORD data specification ‐ now available in four languages

To prepare their data submissions, cancer registries need to follow Annex 3 to the CONCORD‐2 protocol (password required). Annex 3 contains the definition of all the valid codes that can be used for each variable in the data set.

To make the data definitions more accessible where English is not the first language,     Annex 3 is now available in Chinese, English, Portuguese and Spanish. We are extremely grateful to the following colleagues for their expert translations from the English original:

  • Chinese: Yannan Yuan (袁延楠) and Ning Wang (王宁) (Beijing Cancer Registry, China); Ruoran Li (李若然) (LSHTM) and Xiao‐Si Wang (王思晓) (LSHTM)
  • Spanish: Gustavo Hernández Suarez (National Cancer Institute, Bogotá, Colombia) and Natalia Sanz (LSHTM)
  • Portuguese: Renata Abrahão, Manuela Quaresma and Helena Carreira (LSHTM)

For the many cancer registries where English is not the first language, these translations should simplify participation in the global surveillance of cancer survival.

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The CONCORD team is multi‐lingual

The CONCORD team in London can respond to queries in Chinese, English, French, Italian, Portuguese and Spanish. Write to concord@lshtm.ac.uk with the “subject” written in your preferred language.

  • Dr Michel Coleman MD, Professor of Epidemiology and Vital Statistics
  • Dr Claudia Allemani PhD, Lecturer in Cancer Epidemiology
  • Dr Xiao-Si Wang PhD, Research Fellow
  • Helena Carreira MPH, Research Fellow
  • Rhea Harewood MSc, Research Fellow
  • Jane Ahn MSc, Data Manager
  • Natalia Sanz BA, CONCORD Programme Manager
  • Dr Finian Bannon PhD (Cancer Focus Northern Ireland, Belfast, UK), seconded part-time
  • Dr Matt Soeberg PhD (Cancer Institute NSW, Sydney, Australia), seconded part-time
  • Hui You MSc (Cancer Institute NSW, Sydney, Australia), seconded part-time

We are now recruiting a Clinical Lecturer and an Administrative Assistant. We will shortly recruit another Research Fellow.

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Workshops on the CONCORD protocol

The CONCORD Working Group meeting in Cork in 20‐21 September 2012 was the first opportunity for many participating registries to discuss the overall programme and the design of the CONCORD‐2 study. We spent two days reviewing the protocol, line by line, with 90 participants from 48 countries. The protocol was later revised in the light of these discussions.

Since then, we have held additional workshops in several countries, often alongside national or international meetings, to explain the data definitions, study design, data extraction and life tables:

  • Buenos Aires, Argentina, December 2012, for cancer registries in Latin America: Jean-Michel Lutz (Uruguay) and Jaume Galceran (Spain)
  • Arkhangelsk Cancer Registry, Russian Federation, November 2012
  • Puerto Rico Cancer Registry, December 2012
  • Thiruvunananthapuram, India, National Cancer Registry Programme, December 2012
  • Beijing, China, for all the Chinese registries, February 2013
  • Webinar with the North American Association of Central Cancer Registries (NAACCR), March 2013 (Hannah Weir, CDC, Atlanta and Chris Johnson, Idaho Cancer Registry, USA)

Chris Johnson (Idaho) and Amy Kahn (New York) have written a SAS program to extract data from the structure used by the NAACCR programme for Canada and the USA to the structure in the CONCORD protocol. This program is currently being tested. We are extremely grateful for this initiative, undertaken with the collaboration of the SEER and NPCR programmes.

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More participating cancer registries

Many more cancer registries have signed up to participate in CONCORD-2. As of 15 May 2013, more than 250 population-based registries in 61 countries have joined.

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External review of the Québec registry

The CONCORD programme responded to a request from Dr Jean Latreille at the Québec Oncology Directorate, Canada, to assist the Québec Cancer Registry with their participation in CONCORD-2. Dr Jean-Michel Lutz (Uruguay, CONCORD Steering Committee) and Zoé Uhry (Institut National de Veille Sanitaire, Paris), undertook an independent external review of the registry in January 2013. The full report is available here. We are very grateful to Dr Lutz and Mlle Uhry for their expert assistance.

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Scientific conferences

The CONCORD study has been presented at several national and international meetings:

  • Northern State Medical University, Arkhangelsk (Russian Federation), November 2012
  • 28th International Papillomavirus Conference, San Juan (Puerto Rico), December 2012
  • National Cancer Registration Programme, Thiruvananthapuram, Kerala (India), 6-7 December 2012
  • Group for the Registration and Epidemiology of cancer in Latin Language countries (GRELL), Siracusa, Italy, May 2013

We plan to present or discuss the programme at other meetings in 2013:

  • North American Association of Central Cancer Registries, Austin TX, USA, June 2013
  • International Association of Cancer Registries, Buenos Aires, October 2013

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Teaching and capacity-building

The 8th edition of the annual short course Cancer survival: principles, methods and applications will be held at the London School of Hygiene and Tropical Medicine, 24-28 June 2013. The brochure is accessible by clicking here. Applications can be submitted online.

The London course is run in collaboration with the International Agency for Research on Cancer in Lyon, France, under a Memorandum of Understanding between the two institutions. The Agency’s regular one-week summer course on cancer registration will be held during 17-21 June 2013, and the two-week course on cancer epidemiology from 24 June to 5 July 2013. The courses are coordinated, so participants can choose to spend the first week in Lyon and the second week in London. Faculty members are exchanged in both directions.

This year, we have awarded six CONCORD Training Fellowships in Cancer Survival to scientists who will attend the London course from cancer registries in low- and middle-income countries. The fellows come from China, Colombia, Lebanon, Sudan, Russian Federation and Thailand. The fellowships cover return airfare, course fees, accommodation and a small living allowance.

Jean-Michel Lutz (Uruguay, CONCORD Steering Committee) participated in a course on improving data quality and basic analysis of cancer registry data in October 2012 in Cali, Colombia, to celebrate the 50th anniversary of the Cali cancer registry, the oldest in Latin America. The course was organised by IARC, the National Cancer Institute of Colombia, the Cali registry and Universidad del Valle.

A one-day workshop on Cancer survival – an introduction to principles, methods and applications in cancer control will be held in Buenos Aires on Friday 25 October 2013, as part of the IACR 2013 conference programme. The fee is $50 and you can register for this workshop here.

A four-day workshop Cancer survival – a workshop on principles, methods and analysis will be held at the King Hussein Cancer Centre in Amman, Jordan, 2-5 December 2013. Further details will be available in due course.

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Funding

The following agencies have committed funding or personnel to CONCORD-2:

  • Canadian Partnership Against Cancer (Toronto), two years 2013-14
  • Cancer Focus Northern Ireland (Belfast), half-time researcher seconded to London 2013-14
  • Cancer Institute New South Wales (Sydney), two part-time researchers
  • Cancer Research UK (London), four years 2013-16
  • Centers for Disease Control and Prevention (Atlanta), three years 2012-15
  • Children with Cancer UK (London), PhD student
  • Swiss Re (London), two years 2012-13
  • Swiss Cancer Research foundation (Bern), three years 2013-16

Other agencies are also considering financial or scientific collaboration.

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CONCORD Steering Committee

The Steering Committee has several new members:

  • Dr Bernard Rachet MD PhD, Clinical Senior Lecturer in Cancer Epidemiology, Cancer Research UK Cancer Survival Group, London, UK
  • Richard Stephens, cancer survivor, Chair of the Consumer Liaison Group, National Cancer Research Institute, London, UK
  • Dr Hans Storm MD, Director, Cancer Prevention and Documentation, Danish Cancer Society, Copenhagen, Denmark
  • Hildrun Sundseth, cancer survivor, Board Member, European Institute of Women’s Health, Dublin, Ireland
  • Dr David Forman, Head of Cancer Information Section, IARC, Lyon, France

Two of the new Steering Committee members are cancer survivors who are also actively engaged in supporting cancer research and health policy to reduce inequalities. They will bring a valuable new perspective to the programme.

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New institutional collaboration with IARC

The London School of Hygiene and Tropical Medicine has reached a new agreement on collaboration with the International Agency for Research on Cancer, signed by the Directors of both institutions. The agreement is designed to secure the widest engagement in the CONCORD programme for global surveillance of cancer survival. The two institutions already collaborate on teaching of cancer epidemiology and survival, and exchange teachers on their respective summer courses. This new agreement fits the missions of the London School (“to contribute to the improvement of health worldwide through excellence in research, postgraduate teaching, and advanced training in national and international public health and through informing policy and practice in these areas”) and the Agency (“promoting international collaborative research, especially in low- and middle-income countries, to identify the causes of cancer, so that preventive measures might be adopted and the burden of disease and associated suffering reduced.”). IARC has nominated Dr David Forman, Head of the Cancer Information Section, to the CONCORD Steering Committee. Further meetings will be held soon to develop the collaboration.

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Endorsements

We are delighted that the following agencies have provided funding or written endorsement for the CONCORD programme, bringing the number to 29 national and international bodies:

  • Asociación Española contra el Cáncer (aecc) (Madrid, Spain)
  • Association of European Cancer Leagues (ECL) (Brussels, Belgium)
  • Canadian Association of Provincial Cancer Agencies (CAPCA) (Toronto, Canada)
  • Canadian Council of Cancer Registries (Toronto, Canada)
  • Canadian Partnership Against Cancer (CPAC) (Toronto, Canada)
  • Cancer Focus Northern Ireland (Belfast, UK)
  • Cancer Institute New South Wales (Sydney, Australia)
  • Cancer Research UK (London, UK)
  • Centers for Disease Control and Prevention (CDC) (Atlanta, USA)
  • Children with Cancer UK (London, UK)
  • Danish Cancer Society (Copenhagen, Denmark)
  • European CanCer Organisation (ECCO) (Brussels, Belgium)
  • European Institute for Women’s Health (Dublin, Ireland)
  • International Agency for Research on Cancer (IARC) (Lyon, France)
  • International Atomic Energy Agency (IAEA) (Vienna, Austria)
  • International Network for Cancer Treatment and Research (INCTR) (Brussels, Belgium)
  • Israel Centre for Disease Control (Tel-Hashomer, Israel)
  • Jolanta Kwaśniewska’s Foundation (Warsaw, Poland)
  • Members of the European Parliament Against Cancer (MAC) (Brussels, Belgium)
  • National Cancer Institute, Center for Global Health (NCI) (Washington DC, USA)
  • National Institute for Health Research (NIHR) Consumer Liaison Group (Leeds, UK)
  • National Institute for Cancer Epidemiology and Registration (NICER) (Zürich, Switzerland)
  • North American Association of Central Cancer Registries (NAACCR) (Chicago, USA)
  • Organisation for Economic Co-operation and Development (OECD) (Paris, France)
  • Swiss Cancer League (Zürich, Switzerland)
  • Swiss Cancer Research foundation(Bern, Switzerland)
  • Swiss Re (London, UK)
  • Union for International Cancer Control (UICC) (Geneva, Switzerland)
  • WHO Regional Office for Europe (WHO-EURO) (Copenhagen, Denmark)

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