Newsletter No. 7 – 17 July, 2013

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Cancer registries, data submission and quality control

The CONCORD protocol was revised following discussions at the CONCORD Working Group meeting in Cork, Ireland, 20-21 September, attended by more than 90 Working Group members from 48 countries. The call for data was issued on 20 November 2012.

As of 17 July 2013, 279 population-based cancer registries had registered to participate. So far, we have received 1,920 data sets from 211 registries. More data sets are still arriving.

The first phase of quality control has been completed on 1,840 data sets from 203 (96%) registries, and reports have been sent to 197 (97%) of those registries. The remaining 80 data sets from 8 registries were not viable for quality control and the registries are preparing to resubmit them.

In some registries, the data sets are ready for transmission, but ethical approval processes are not yet complete. A further 31 registries are in the process of completing their data sets.

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Other registries that wish to participate in CONCORD-2

If you would like your registry to participate in the CONCORD study, please enter the name of your cancer registry and the email of the main contact person at:
http://www.lshtm.ac.uk/eph/ncde/cancersurvival/research/concord/registration.html

An automated email will be sent to your nominated contact, with the username and password for your registry. You will need the username and password to access the CONCORD protocol, plus annexes, policy documents, ethical approvals, newsletters and publications, at the following link: CONCORD documents

Please note: documents on the password-protected pages of the CONCORD web-site are only accessible to participating registries and Steering Committee members. Other recipients of this newsletter who would like access to these documents should contact us at concord@lshtm.ac.uk.

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CONCORD questionnaire

If you have not already done so, you will also need to complete the questionnaire, either online:
https://www.survey.lshtm.ac.uk/concord2
or as a Word document that you can return by email:
Cancer registry questionnaire.doc
We have received 2 or more questionnaires from some cancer registries! Not sure if your registry has already submitted the questionnaire? Please send an email to:
concord@lshtm.ac.uk.
Please put “Questionnaire – <your registry name>” in the subject line.

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Three ways to send data for CONCORD

We can only accept data files that are transmitted under the highest standards of security.

You can choose between two electronic utilities, either the CONCORD file transmission utility or the commercial HyperSend® utility. Both utilities deploy 256-bit Advanced Encryption Security (AES). Both utilities are free for CONCORD participants. Full details on how to construct your data files and send your data are available on the CONCORD web-site (Annex 5 to the CONCORD-2 protocol). You will need your username and password.

You can also send data on CDROM via postal courier services: the special precautions required to maximise security during transmission are described in detail in Annex 5.

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Scientific meetings and conferences

Progress reports on CONCORD have been presented at several national and international meetings within the last 12 months:

  • Northern State Medical University, Arkhangelsk (Russian Federation), November 2012
  • 28th International Papillomavirus Conference, San Juan (Puerto Rico), December 2012
  • National Cancer Registration Programme (NCRP), Thiruvananthapuram, Kerala (India), December 2012
  • Group for the Registration and Epidemiology of cancer in Latin Language countries (GRELL), Siracusa (Italy), May 2013
  • North American Association of Central Cancer Registries (NAACCR), Austin TX (USA), June 2013

Further updates on progress are planned at:

  • International Association of Cancer Registries (IACR), Buenos Aires (Argentina), October 2013
  • Clinical Oncological Society of Australia (COSA), Melbourne (Australia), November 2013

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Teaching and capacity-building

Update for 2013

The 8th edition of the annual short course “Cancer survival: principles, methods and applications” was organised by the Cancer Research UK Cancer Survival Group at the London School of Hygiene and Tropical Medicine (LSHTM), 24-28 June 2013. It was attended by 51 participants from 24 countries.

The London course is run in collaboration with the International Agency for Research on Cancer (IARC) in Lyon, France, under a Memorandum of Understanding between LSHTM and IARC. The Agency’s regular one-week summer course on cancer registration was held during 17-21 June 2013, and its two-week course on cancer epidemiology ran from 24 June to 5 July 2013.

The courses in London and Lyon have been coordinated for the last three years, so that participants can choose to spend the first week in Lyon and the second week in London.

Cancer Survival Group staff teach at IARC in the first and third weeks (this year, Manuela Quaresma and Camille Maringe), and IARC sends a faculty member to teach on the LSHTM course (this year, Dr Rajaraman Swaminathan PhD, Chennai, India).

In 2013, we awarded six CONCORD Training Fellowships in Cancer Survival to scientists who attended the London course from cancer registries in low- and middle-income countries. The fellows came from China, Colombia, Lebanon, Sudan, Russian Federation and Thailand. The fellowships covered return airfare, course fees, accommodation and a small living allowance.

The Trade and Investments Section of the British Embassy in Algiers (Head: Marcus Grazette) kindly provided CONCORD Training Fellowships in Cancer Survival to support participation in the London course of two scientists from Algerian cancer registries, with collaboration from the Algerian Ministry of Health.

Dr Jean-Michel Lutz (Uruguay, CONCORD Steering Committee) participated in a course on improving data quality and basic analysis of cancer registry data in Cali, Colombia, in October 2012, 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.

Dr Claudia Allemani and Helena Carreira, from the CONCORD Analytic Team in London, participated in the Workshop on Quality Control for cancer registry data, organised by the European Network of Cancer Registries (ENCR) together with the European Commission’s Joint Research Centre (JRC) at Ispra, Italy, in July 2013.

Further activities

We will run a one-day workshop on cancer survival, as an introduction to the main principles, methods and applications in cancer control, in Buenos Aires on Friday 25 October 2013, as part of the IACR conference programme, in collaboration with the Argentinian Ministry of Health. The local organiser of our workshop is Dr Maria Graciela Abriata. Registration is open on the IACR web-site http://www.iacr2013.com.

We are in advanced discussion with the King Hussein Cancer Center in Amman, Jordan, to hold an intensive four-day course in December 2013. This course will provide an introduction to the principles, methods and applications of cancer survival for population-based cancer registries in the Middle East. It will include two days of lectures, followed by two days of computer-based analytic exercises using anonymised data provided by the participating registries. Further details will be announced 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), researcher seconded to London 2013-14
  • Cancer Institute New South Wales (Sydney), two 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 2013-2015
  • Swiss Re (London), two years 2012-14
  • Swiss Cancer Research foundation (Bern), three years 2013-16
  • Swiss Cancer League (Bern), three years 2013-16

Previous funding agencies:

  • University of Kentucky, Lexington, KY

Other agencies are considering financial or scientific collaboration.

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Personnel working on CONCORD-2

  • 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 currently recruiting an additional Research Fellow in Epidemiology for CONCORD for a 3-year post from September 2013. Go to www.jobs.ac.uk or http://jobs.lshtm.ac.uk/Vacancy.aspx?ref=CC09, or send an email to jobs@lshtm.ac.uk, quoting reference CC09. Applications must be made online. The closing date is 22 August 2013. LSHTM is an equal opportunities employer.

We are also recruiting an Administrative Assistant. Go to www.jobs.ac.uk or http://jobs.lshtm.ac.uk/Vacancy.aspx?ref=CC08 or send an email to jobs@lshtm.ac.uk, quoting reference CC08. Applications must be made online. The closing date is 1 September 2013.

We will shortly advertise a post for a Clinical Lecturer. Keep an eye on www.jobs.ac.uk.

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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 PhD, Head of Cancer Information Section, IARC, Lyon, France
  • Prof Olufemi Ogunbiyi MD, Director of Ibadan Cancer Registry, Ibadan, Nigeria

We are very grateful for the contribution of Ebrima Bah, Director of the Gambian Cancer Registry for many years, who has stepped down from the CONCORD Steering Committee.

The Steering Committee will meet to review progress and consider plans for 2014 in Buenos Aires, Argentina, on Thursday 24 October 2013, shortly after the 35th Scientific Conference of the International Association of Cancer Registries.

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New institutional collaboration

The London School of Hygiene and Tropical Medicine has reached a new agreement (Memorandum of Understanding) on collaboration with the International Agency for Research on Cancer, signed by the Directors of both institutions in December 2012. This agreement is designed to secure the widest possible engagement in the CONCORD programme for global surveillance of cancer survival. The terms of the agreement were approved by the CONCORD Steering Committee at its meeting in Cork, Ireland, in September 2012.

The London School and the Agency already collaborate in teaching cancer epidemiology and survival to an international audience, 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 PhD, Head of the Cancer Information Section, to the CONCORD Steering Committee.

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Intellectual Property Rights

At its meeting in Cork, Ireland, in September 2012, the CONCORD Steering Committee also requested a supplementary agreement on Intellectual Property Rights (IPR) with the International Agency for Research on Cancer, to cover the use of protocols, tools and software developed for the CONCORD programme under the Memorandum of Understanding on collaboration between LSHTM and IARC, with appropriate acknowledgements. The IPR agreement was signed by both institutions in July 2013.

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Endorsements

We are delighted that 30 agencies have provided funding, scientific personnel or written endorsement for the CONCORD programme, emphasising the wide support for global surveillance of cancer survival:

  • Asociación Española contra el Cáncer (aecc) (Madrid, Spain)
  • Association of European Cancer Leagues (ECL) (Brussels, Belgium)
  • British Embassy in Algiers (Algeria)
  • 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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