Home Welcome to the EUROCOURSE website. EUROCOURSE: EUROpe against Cancer: Optimisation of the Use of Registries for Scientific Excellence in research The main purpose of EUROCOURSE is to improve the use of cancer registries in European countries through program owners' and researchers' networking, information exchange and benchmarking of best practice. This project is initiated by the European Network of Cancer Registries (ENCR) and their stakeholder paymasters. EUROCOURSE is funded within the 7th Framework Programme of the Directory General Research of the European Commission under number LSSH–CT–2008–219453. Eurocourse newsletter
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Project summary EUROCOURSE will explore the apparent diversity in the quality, usage and output, commissioning and funding of cancer registries across Europe. Therefore it focusses on 1. Funding Organisations, i.e. program owners and program managers like Ministries and Cancer societies and 2. Cancer registries.
The 10 workpackages will synthesize and stimulate and dissiminate best (and ethical) practices in data collection, management, analysis, interpretation and peer reviewed publication. The collaborative and comparative use of cancer registration data will serve to improve cancer control across Europe and to strengthen population-based translational cancer research in each of the 5 relevant domains: cancer burden in population, prognosis, quality of care and quality of life, public health and etiology. Project description (DoW) Revised project description (DOW), May 2012 Potential impact This ERA-NET proposal and the forthcoming discussions and exchange of expertise will stimulate the establishment of guidelines, methods and procedures ensuring the collection of solid and comparable data on cancer in Europe. It will also establish the frame for linking these data to existing databases, broadening thus the European capacity for evidence-based cancer control, and optimal clinical care.
This project has the potential to optimize cancer registration and put it in the service of internationally acclaimed cancer research. Funding EUROCOURSE is funded by the EU DG XII as LSSH–CT–2008–219453 Reports Interim report - Periodic report period 1 Interim report - Description of Work period 1 Final report - Periodic report period 2 Final report - Description of Work period 2 Final report - Final report
Purpose The main purpose of EUROCOURSE is to improve the use of cancer registries in European countries through program owners' and researchers' networking, information exchange and benchmarking of best practice.
EUROCOURSE will explore the apparent diversity in the quality, usage and output, commissioning and funding of the registries. The vital position of cancer registraties in cancer control will be rooted through facilitation of transnational and translational research. EUROCOURSE will culminate in a European Cancer Control Summit in the autumn of 2011 for all stakeholders in the cancer control community in Europe.
Objectives The objectives of the project are:
to study and to compare strategies, policies and practices in the funding and management of cancer registries in various European countries to study and to compare approaches and exchange experiences and best practices in research using the cancer registries in Europe to provide recommendations for best practices as well as future training and research to disseminate and to transmit the knowledge collected in the project to researchers, decision-makers and practitioners at regional, national and international level to develop a strategy for programme owners for monitoring cancer and for promoting research on cancer using existing databases to improve the quality, comparability and availability of cancer incidence data and thus strengthen the basis for monitoring cancer incidence and mortality to provide regular and timely information on the burden of cancer to capitalise on existing functions of cancer registries and promote cancer control, training of health scientists, health-care planning and cancer research
Methods Participants EUROCOURSE will adopt a two-pronged approach focussed on: Funding Organisations, i.e. program owners and program managers like Ministries and Cancer Societies: they will be made more aware of registry output as a basis for future commissioning and funding. Inegalities across Europe in access to data, funding of cancer registries and legal support to cancer registration will be usded to aim at the most advanced model for all, because well functioning registries costs EUROCOURSE will adopt a two-pronged approach focussed on: Funding Organisations, i.e. program owners and program managers like Ministries and Cancer Societies: they will be made more aware of registry output as a basis for future commissioning and funding. Inegalities across Europe in access to data, funding of cancer registries and legal support to cancer registration will be usded to aim at the most advanced model for all, because well functioning registries costs <0.50 Euro per inhabitant per year. Cancer registries: will be provided with infrastructure for better communication (modern facilities for exchange of data and information) and for harmonization of their data, biospecimens and practices. The process of data and biospecimens collection at European level will thus be streamlined to provide comparable, accurate and timely statistics as well as improved avaliability of biospecimens for cancer research. ERA-net EUROCOURSE is an ERA-net project. A European Research Area (ERA) network facilitates maximal exchange of ideas and researchers. Furthermore it provides the ground for a more direct involvement of the national funding bodies (Ministries and Cancer Societies) in European cancer registration and strengthens its sustainability. Cancer registries: ENCR/ IARC Since 1989 the European regional and national registries are associated in the European Network of Cancer Registries (ENCR, counting about 170 members) with the secretariat provided at the International Agency for Research on Cancer (IARC) of WHO in Lyon. The ENCR members contribute to international studies. The ENCR facilitated development of several large databases and projects, largely funded by the European Commisson: EUROCIM (incidence & mortality, since 1989) EUROCARE (survival, since 1989) ACCIS (childhood cancer, since 2000) RARECARE (rare cancers, since 2003) HAEMACARE (hematopoietic malignancies, since 2005) EUNICE (multi-partner, multi-topic project, since 2007) Workpackages The workpackages aim to combine the available advances in informatics technology with data privacy protection and to automatise data collection on European level through a common portal, while ensuring adequate quality control. The guidelines on how to handle in-situ cases, multiple primaries, clinical and death certificate only cases, etc. will be developed. Special interest will be given to perspectives for clinical evaluation in relatively new domains of geriatric oncology, cost-effectiveness of new ‘expensive’ drugs and quality of life in long term survivors, in which registries can play a pivotal role and truly reflect needs of patients. A workpackage will be dedicated to define the essential role of registries in evaluation of population-based screening for cancer (e.g. screen-detected and interval carcinomas) and for supporting population-based cancer biobanking. Ethical conduct of registry-based operations and studies will be clarified, based on existing best practices that comply with the EU-directive. A special committee will be established to study these issues for the benefit of patients and their families.
Coordination Executive Board The Executive Board (EB) consists of the Work Package Leaders, two delegates from the Steering Committe of the ENCR (S. Siesling and F. Bray) and one delegate of IARC (E. Steliarova-Foucher). There are three annual meetings and monthly conference calls of the EB. Summaries of minutes of the meetings will be posted on this website: see 'Agenda'. Steering Board The Steering Board (SB) consists of the members of the EB, one representative of each contract partner and the ENCR Steering Committee (9 members). The SB meets once a year, summaries of minutes of this meetings will be posted on this website: see 'Agenda'. Advisory Council With consent of the SB, the following type of experts will be invited for this council that will meet once a year: patient groups, clinical oncology leaders of European professional associations, cancer societies, policy makers at Ministries, biomedical industries, the Health committee from the European parliament and experts in IT, privacy, legal etc.
Ethical Issues Confidentiality and ethical issues occupy a major component of cancer registration, both in the daily running of the registries as well as in their extended role arising from linkages to bio-banks, clinical and screening data bases. The data collection that will take place in the current proposal will be from institutions and not individuals, which already adhere to strict confidentiality laws of various European countries as well as European directives on personal identifiers use. Additionally, data submissions to external repositories are being monitored by ethics committees operating in the parent institutions. Therefore, ethical issues are already addressed by multiple organizations before even the data collection for this study takes place. Data collection at the Institutional level will be dealt with in an adequate manner and in agreement with the single institute and prevailing laws. The regulations of data protection according to the involved countries will strictly be followed. No information will be made public without consent of the respective national authorities. Nevertheless, it should be noted, that the data that will be collected and collated under this proposal do not contain personal identifiers (or geographic identifiers which could lead to identification of an individual by sheer virtue of the numbers) and do not compromise the identification of individual cancer patients. Consequently, any analysis arising from the data collected does not allow the possibility of identify the individual patient and compromising his/her wellbeing.
Participants EUROCOURSE will be performed in cooperation with 15 partners and 3 sub-contractors. Partners The 15 EUROCOURSE partners represent program owners and/or program managers from 12 countries; regional and national cancer registries, representatives of Ministries of Health or Cancer Societies and regional authorities. For more detailed information about the partners: see column on the right. Subcontractors IARC MedLaw Consult FP-Tools ECCO
1. NLD Comprehensive Cancer Centre South (IKZ), Eindhoven, The Netherlands The Eindhoven Cancer Registry is the core epidemiological research and dissemination activity within the Comprehensive Cancer South (IKZ) that covers most of the South of the Netherlands, with a source population of almost 2.5 million people. IKZ is a regional non-profit organisation, recognised by the Minister of Health, the Dutch Cancer Society, the national cancer patient association and health insurance companies. Its aims to coordinate and promote quality of oncological care (access and adequacy) at regional level; it does so in professionally harmonious collaboration with 7 regional centers, all together covering the Netherlands. Through their respective embedding comprehensive cancer centers they are assembled in a national association that a.o. operates the national cancer registry that also specifies the minimal registration process in all 100 hospitals, thereby actively contributing to the national cancer control plan, NPK, since 2005. Involved persons Jan-Willem Coebergh, MD PhD, Head of Research, IKZ, also Professor of Cancer Surveillance at Erasmus MC, Rotterdam Corina van den Hurk MSc, clinical studies Maryska Janssen-Heijnen PhD, prognostic studies and elderly Lonneke van de Poll-Franse, PhD, Quality of life studies (also at University of Tilburg) Valery Lemmens PhD, Quality of Care studies Marieke Louwman, PhD, public health and studies of radiotherapy and second cancers Esther de Vries, PhD, skin cancer studies, Erasmus MC and IKZ Isabelle Soerjomataram. MD, PhD, studies of multiple primary cancer, Erasmus MC and IKZ
2.ROU Ministry for Public Health, Bucharest, Romania The Ministry of Public Health is the central authority in Romania, responsible for setting organization and functioning standards for public health institutions, developing and financing national public health programmes (including immunization), collecting data and drawing up reports on the population’s health status. The health policy principles adopted by the Ministry of Public Health (through the recently adopted new package of health laws) include accessibility, universality, solidarity in funding health services, incentives for effectiveness and efficiency as well as service delivery linked to health care needs. The laws were amended to reflect the specific circumstances, such as the initially incomplete definition of roles of key stakeholders, lack of leadership and managerial skills at the level of the Ministry of Public Health. Involved persons Maria Varga, Minister of Health, Ministry of Public Health, Bucharest Daniela Coza, Cluj Oncological Institute
4. EST University of Tartu, Tartu, Estonia University of Tartu, as the programme owner, is the national university of Estonia. University of Tartu has 11 faculties, 3 research institutes and 6 colleges with more than 70 departments, institutes and clinics. The total number of students is over 18,000 with a teaching stuff of 1,300. The Estonian Genome Project of University of Tartu is a research institute reorganised from the Estonian Genome Project Foundation at the University of Tartu with the goal to create a database (bio-bank) of health, genealogy and genome data from 100 000 estonian individu- als by 2010. The database will make it possible to carry out international collaborations to find links between genes, environmental factors, lifestyles and common diseases (cancer, diabetes, depression, cardio-vascular diseases, etc) and to apply the information gained from research in making new discoveries in genomics and epidemiology, which eventually lead to increasing the efficiency of health care. The legal framework for the activities of the Estonian Genome Project of University of Tartu is based on the Human Genes Research Act (HGRA) and the Council of Europe Convention on Human Rights and Biomedicine. Involved persons Prof. Andres Metspalu, founder of the Estonian Genome Project, also director of this Project of the University of Tartu, also head of the Dept. of Biotechnology of the Institute of Molecular and Cell Biology at University of Tartu Prof. Mati Rahu
5. AUT Statistics Austria, Vienna, Austria Statistics Austria is the national statistical institute of Austria. It is a non-governmental, non-profit organisation providing reputable statistical information. On the basis of many years experience with censuses, surveys, and data collections Statistics Austria provides information in many fields of policy, society, and economy. One of the four operating departments directly involved in the generation of statistics is the Directorate Population Statistics, covering information about the population by demographic characteristics, peoples living situation, their work situation, their health etc. One of the main projects in the area of health statistics is the Austrian National Cancer Registry. The Austrian National Cancer Registry is in charge of providing population based cancer incidence data for the whole of Austria, covering a population of more than 8.3 Million.
Major topics for the Austrian National Cancer Registry are quality control and completeness of case ascertainment. The use of death certificates for terms of follow-up, quality control and completeness has a longstanding tradition. At the moment a large study on regional comparability of the data regarding regional differences in completeness is under preparation. One topic becoming more and more relevant is public relations. As data providers are in large part data users as well, it is very important to show what happens to cancer forms. A transparent processing of the statistic and an easy access to the results through the internet is what we focus on. According to the Federal Statistics Act 2000 (Bundesstatistik Gesetz 2000) the Austrian government appointed Statistics Austria as the national provider of various statistics. The government finances all statistics prescribed by this law, including cancer statistics. Therefore, Statistics Austria fulfils the role of Programme Manager of the Austrian Cancer Registration Programme. Involved persons Nadine Zielonke
6. BEL Scientific Institute of Public Health, Brussels, Belgium The Scientific Institute of Public Health (IPH) serves the federal Belgian State. Its main mission is scientific research in view of support of health policy. It provides also expertise and public service in the field of public health. The IPH plays an important role as part of the Belgian representation at the level of the European Union and some international organizations as the World Health Organization (WHO), the Organization for Economic Cooperation and Development (OECD) and the Council of Europe, whenever scientific and/or technical aspect of public health are involved.
The unit of Cancer Epidemiology is specialized in evaluation of diagnostic methods, and health technology assessment of techniques used for screening and treatment of cervical cancer precursors. The unit is elaborating European initiatives in the framework of biobanking, where archived human material (cervical smears, breast biopsies, material from breast punctions) is stored for future scientific research and for auditing of cancer screening and primary prevention initiatives. In particular, protocols are being worked out to use cervical cytology biobanking, linked to cancer registries and HPV vaccination registries to monitor early and long term impact of prophylactic HPV vaccination. Moreover, the IPH has recognized expertise in the field of statistical analyses (trend analysis, spatial analyses), monitoring of cancer screening activities and legal and ethical aspects of data linkage, data protection and processing. Involved persons Dr. Herman van Oyen, Epidemiologist Dr. Marc Arbyn, Epidemiologist Dr. An van Nieuwenhuyse, Epidemiologist Amidu Raifu, Statistician Cindy Simoens, Scientific employee Anja Michaelski, Secretary
7. DNK Danish Cancer Society, Copenhagen, Denmark The Department for Cancer Prevention and Documentation is a project management organisation in the Danish Cancer Society. The Danish Cancer Society is a major player in the area of research funding in Denmark, providing as a charity organisation about half of all cancer research funds in Denmark for basic, biological and epidemiological cancer research and a substantial part for clinical and translational cancer research. It is a non-governmental, non-profit organisation specialising in research management, funding, cancer control, prevention and patient support. It was mandated by the Danish Government from 1943-1997 with regard to running the Danish Cancer Registry, and provides still professional assistance with research and analysis of the National cancer data set, and is involved as advisors to the Government in the implementation of governmental programmes for cancer control.
The Cancer Society holds both national and international workshops and provides reports on the scientific and technological state of the art as a basis for calls for proposals in specific research areas, be it epidemiology, cancer registration, translational, basic biological or clinical research. In this context the Cancer Society functions as secretariat for the collaboration between the Nordic countries on the cancer registry data dissemination programme “NORDCAN” and coordinators joint Nordic research projects aimed at improving cancer control.
The department of Cancer Prevention and Documentation deals jointly with the Department (Institute) of cancer epidemiology with the health research sector, Universities and the National Board of Health in cancer research and cancer control programmes with an annual budget of about 8 million Euros. The Research Programme aims at improving the quality and efficiency of health research and the health research infrastructure in Denmark. With this regard, one strategic area of research agenda of the Cancer Society is dedicated to Cancer Registries. In this area, about 0.5 million EURo’s per year are dedicated to various funding measures for cancer registry based research within the cancer society and about 10 million EURo’s available for research activities on cancer either as part of specific calls for proposal or (predominantly) in free competition between basic sciences, clinical, epidemiological and psychosocial (applications usually comprising networks or centres), each of them based on a specific call for proposals. Involved persons Dr. Hans H Storm, Cancer registration, Ethics, Confidentiality, Epidemiology Dr. Iben Holten, Screening Prof. Dr Jørgen H Olsen, Epidemiology, occupational cancer, childhood cancer Mrs. Gerda Engholm, Senior statistician – data analysis, statistics, NORDCAN Dr. Inge Clemmesen, Registry surveys, prevention Prof. Julio Celis, Bio-bank, Translational cancer research, basic cancer research Dr. Anne Tjønneland, Bio-bank, population based biobank and epidemiology
8. DNK National Board of Health, Copenhagen, Denmark The National Board of Health in Denmark is part of the sphere of the Ministry of the Interior and Health, which also includes health sector research institutes. The National Board of Health is responsible for monitoring the state of health of the Danish Population, health planning and quality assurance. National Board of Health hosts in close relation to these tasks a great variety of nation wide statistical health registers, which are essential for decision making and planning on all levels of administration. Furthermore, the registers are vital for scientific research projects and health statistical analysis. The National Board of Health hosts registers that contain information on health, morbidity and mortality as well as personal information on the Danish population. Data collection is regulated by law and one of the basic tasks of the National Board of Health is to collect raw health and personal data, refine data and update the health registers. The National Board of Health generally publishes statistics yearly when the registers are updated.
Since 1998 the National Board of Health has been responsible for the Cancer Register. Involved persons Mrs. Dorte Hansen Thrige, Head of Division of Health Statistics Dr. Ole Larsen, Medical advisor Mrs. Marianne L. Gjerstorff, Head of Section Cancer Registry
9. FIN Cancer Society of Finland, Helsinki, Finland The Cancer Society of Finland is a project owner as it is a major player research funding of the Finnish Cancer Registry. It is a non-governmental, non-profit organisation on cancer control and care and other such issues on cancer, specialising also in research management and funding. The Cancer Society of Finland is technically maintaining the Finnish Cancer Registry, which is one of the national health care registers. The cancer registry database is regulated by the STAKES, the National Research and Development Centre for Welfare and Health. The Finnish Cancer Registry is the program owner. The cancer registration consists, in addition to the general registration of cancer cases and related statistical and epidemiological research on cancer, also on the registration of the national organised cancer screening programmes. The Mass Screening Registry, being a unit within the Finnish Cancer Registry, is in charge of the registration and evaluation of the cancer screening programmes. It also conceives and develops ideas on organising research proposals and quality development over the field, both on the national and international level. Involved persons Dr. A. Anttila, Director of Research of the Mass Screening Registry, Finnish Cancer Registry (leader of the WP5) Mrs. L. Rita, Research Secretary, Mass Screening Registry, Finnish Cancer Registry (WP5) Dr. T. Sarkeala, Scientist, Mass Screening Registry, Finnish Cancer Registry (WP5) Dr. N. Malila, Director of the Mass Screening Registry, Finnish Cancer Registry (WP5) Dr. R. Sankila, Medical Director of the Finnish Cancer Registry (WP2)
10. ISL Ministry of Health and Social Security, Reykjavik, Iceland
The Ministry of Health and Social Security in Iceland was established on January 1st 1970 and has the responsibility for administration and policy making of health and social security issues in Iceland as perscribed by law, regulations and other directives. Among the issues that the Ministry deals with are:
• Public Health
• Patient rights
• Operation of Hospitals, Health Centers and other providers of service
• Promotion of Information Technology in the health services in Iceland
• Social security
• Pharmaceutical affairs
The Ministry of Health and Social Security is responsible for the overall administration of health affairs and matters relating to social security insurance other than unemployment insurance. Involved persons Dr. Sveinn Magnússon, Head of Department Dr. Laufey Tryggvadottir, Managing director of the Icelandic cancer Registry
11. ITA Regional Centre for Cancer Prevention, Piedmont, Italy The Regional Centre for the Epidemiology and Cancer Prevention was founded in 1996 by the Piedmont Region. It is founded for the study of descriptive, etiological and clinical epide¬miology of cancer and in its function funds the regional cancer registry. The area covered by the Piedmont Cancer Registry corresponds to the city of Torino, which is the main city of the Piedmont Region, in the North-West of Italy. At the year 2001 a census the population amounted to 902.235 inhabitants. In Turin and its surroundings fourteen public hospitals and twelve private clinics offer cancer treatments, in different proportion of their activity. Recently the Piedmont Region has devel¬oped a regional network for cancer services with four sub-areas serving the city of Turin. Since 1992, two screening programs have been set up in the Turin area: a mammographic and a cytological screening. In 1998 a screening program for colon cancer has been implemented.
The Registry is a part of Centre for Cancer Prevention (CPO) and provides periodical reports on cancer incidence, prevalence, mortality and survival, published and updated (www.cpo.it). The data are used by local heath authority for the planning of the regional network of cancer services. The data are also send to Italian Cancer Registries Association database. Involved persons Dr. Roberto Zanetti, Director, Piedmont Cancer Registry, CPO Dr. Stefano Rosso, Senior Epidemiologist, Piedmont Cancer Registry, CPO Mr. Luigi Bisi, Data manager, Piedmont Cancer Registry, CPO Irene Sobrato, Registrar, Piedmont Cancer Registry, CPO
13. SWE Regional Oncologic Centre Board - Uppsala Örebro regionen, Uppsala, Sweden The Regional Oncologic Center in Uppsala-Örebro region (ROC) is a regional authority in Sweden, responsible for the local registration of all incident cancer cases - a task mandated by law. In Sweden there are six administrative health care regions. One of which is the Uppsala-Örebro region, serving seven counties in central Sweden with a total base population of 1,9 million. In each region there is a Regional Oncologic Center. In a subsequent step, regional cancer data are reported to the Swedish National Cancer Register administered by the National Board of Health and Welfare. In addition, more detailed clinical information is collected in all regions on selected sites and forms the basis for national quality registers on cancer. Furthermore, each ROC has an important role in coordinating the work on national and regional practice guidelines on cancer, and in supporting specific research projects. ROC is funding mainly by the counties in the region. Involved persons Mr. Lennart Hellqvist, Chair of the Oncologic Center Board and Chair of the Regional Administrative Working Committee in Uppsala - Örebro region Prof. Mats Lambe - Director of Regional Oncologic Center in Uppsala - Örebro region
15. UK Population Health Directorate, Belfast, (Northern Ireland) The Department’s mission is to improve the health and social well-being of the people of Northern Ireland. It endeavours to do so by ensuring the provision of appropriate health and social care services, both in clinical settings such as hospitals and GPs’ surgeries, and in the community through nursing, social work and other professional services. It also leads a major program of cross-government action to improve health and well-being of the population and reduce health inequalities. This includes interventions involving health promotion and education to encourage people to adopt activities, behaviours and attitudes which lead to better health and well-being. The aim is a population which is much more engaged in ensuring its own health and well-being.
The Health Directorate provides funding for the Northern Ireland Cancer Registry which provides information on cancers for the purposes of research, education and the planning services. Involved persons Dr. Michael McBride, Chief Medical Officer Dr. Anna Gavin, Director of Northern Ireland Cancer Registry
16. IRL Irish National Cancer Registry Board, Cork, Ireland
The National Cancer Registry Board is a state body established in Ireland in 1991 with responsibility for collecting and publishing cancer statistics. It has done this largely through funding a national programme of cancer registration and also through supporting research in cancer epidemiology and health services research. The National Cancer Registry Board is appointed by, and reports to, the Irish Department of Health and Children, which also provides the majority of its budget. The Board carries out its duties largely through the National Cancer Registry.
The functions of the Board were laid down in its Establishment Order as follows:
1. to identify, collect, classify, record, store and analyse information relating to the incidence and prevalence of cancer and related tumours in Ireland
2. to collect, classify, record and store information in relation to each newly diagnosed individual cancer patient and in relation to each tumour which occurs
3. to promote and facilitate the use of the data thus collected in approved research and in the planning and management of services;
4. to publish an annual report based on the activities of the Registry;
5. to furnish advice, information and assistance in relation to any aspect of such service to the Minister.
The information collected is used in research into the causes of cancer, in education and information programs, and in the planning of a national cancer strategy to deliver the best cancer care to the whole population The registry publishes annual reports on cancer incidence, mortality, treatment and survival in Ireland, as well as occasional reports on matters such as projections of cancer numbers. It also has an extensive research program in cancer aetiology, patterns of care/survival, health services research, health economics and quality of life. Involved persons Dr. Harry Comber, Director of the Registry. Other cancer registry personnel to be involved as needed.
17. ESP Basque Foundation for Health Research and Innovation, Spain BIOEF (Basque Foundation for Health Research and Innovation) is a foundation created by the Health Department of the Basque Country in 2002. BIOEF is committed to the promotion of innovation and research in the Basque Health System as a continuous way of developing and improving the general health quality of the Basque population. One of its tasks is the coordination of researchers within the Basque Autonomous Community (BAC) based in public or private hospitals, primary care clinics and the Health Department. The Basque Country Cancer Registry (BCCR) is a population based registry and it was set up in 1986 by the Basque Health Department. The BCCR is one of the registries within the Health Information Service that includes the mortality and the hospital discharge records registries among others. Personal information data is under the Data Protection law.
The main objective of the registry is to provide information on cancer incidence in the BAC to the planning of human and material resources and care of patients. Nonetheless from the beginning the BCCR has participated in etiological cancer research (bladder, cervix) to know about risk factors, high resolution studies of staging and survival (breast), cancer survival and prevalence (Eurocare-Europreval) and studies on childhood cancer. It has also provided means to establish the breast cancer screening programme in 1995 and its monitoring after¬wards and is now providing data to take decisions on a pilot colon-rectum screening pro- gramme. Involved persons Dr. M. Isabel Izarzugaza, Chief of Information Service and head of Basque Cancer Registry. Basque Country Health Department Nerea Larrañaga, senior epidemiologist, EPIC & Survival. Regional Directorate in Gipuzkoa Ruth Martinez, epidemiologist, cancer care studie. Basque Country Health Department Dr. Roberto Bilbao, Biologist, Biomedical research Coordinator, setting up DNA bank. BIOEF
18. SWE Skane county council, Southern Sweden 30000 samples. The service facilities are well equipped for robotic sample handling, bioinformatics and large-scale genotyping.
The Swedish National Bio-Banking Program (www.biobanks.se) is a joint program of the medical universities in Sweden for improved quality and accessibility of bio-banks and protection of integrity in bio-bank-based research in Sweden. Lund University (LU) bio-banking and cancer research are prominent profile areas. LU has coordinating the FP6 Network of Excellence on bio-banking CCPRB (www.cancerbiobank.org) (Cancer Control using Population-based Registries and Biobanks) that focuses on improving the cancer research infrastructure by quality assuring and streamlining bio-banks and the process of linking bio-bank databases to cancer registries. Several Malmo Microbiology Cohort/Maternity Cohort has enrolled more than half of all residents in the region and is enrolling virtually all pregnant women. The Swedish National Tissue Micro Array Center is pioneering the exploitation of the local clinical pathology bio-bank. The Regional Biobanking Center is a large for-service bio-banking facility, currently with about 30 deposits totalling > 30000 samples. The service facilities are well equipped for robotic sample handling, bioinformatics and large-scale genotyping.
The Swedish National Bio-Banking Program (www.biobanks.se) is a joint program of the medical universities in Sweden for improved quality and accessibility of bio-banks and protection of integrity in bio-bank-based research in Sweden. Involved persons Joakim Dillner, Professor, MD, PhD, Coordinator, Virology, Molecular epidemiology; M Goran Berglund, Professor, MD, PhD, Biobanking, cardiovascular diseases, M Joyce Carlson, Associate Professor, MD, PhD PI of Biobanking Center, F Goran Landberg, Professor, MD, PhD. Pathology, Cancer biology and genetics, M Ola Forslund, Associate Professor, PhD Molecular Biology, M
Workpackages Major Deliverables: WP 1: Questionnaire facility for ENCR; including topic of funding for registration and relevant research WP 2: Clarity on ethical principles and permanent EU committee on transnational projects WP 3: Standardization and quality control of data collection and analysis WP 4: Portal for common data entry for dissemination and transnational projects at IARC WP 5: Requirements to registries for evaluation of population-based screening WP 6: Value of population-based clinical evaluation: geriatric oncology, cost-effectiveness and quality of life WP 7: Standardization of biospecimen collection and analysis of cancer biobanking WP 8: Programme for dissemination and training WP 9: European Summit and role of Registries WP 10: Project coordination List of Milestones
Workpackage 1 Exchange of knowledge about national programmes This workpackage will explore possibilities for a harmonized approach for the funding and usage of cancer registries in Europe. It aims to exchange knowledge on national research policies and on national funding programmes related to cancer registries and research based on cancer registries’ data. Furthermore it aims to strengthen the network of cancer registries through exchange of best practice in a mutual learning process. A questionnaire will be developed at the start of the project with work package leaders enabling a mapping and documentation of the funding landscape of cancer registries and research using their data in Europe. Needs for future funding will be explored. Workshops will be organized to discuss the initial results of the survey and to prepare the organization of the First European Cancer Control Summit (see WP 9). List of deliverables WP leader Prof. dr. J.W.W. Coebergh
Comprehensive Cancer Centre South Eindhoven Cancer Registry P.O. Box 231 NL-5600 AE
Tel.: +31-40 297 16 16
The Netherlands Involved in WP1 Prof. dr. J.W.W. Coebergh, Eindhoven, The Netherlands H. Moller, Thames Cancer Registry, United Kingdom E. Steliarova-Foucher, IARC, Lyon, France Subcontractors: IARC, Lyon, France FP-Tools, Eindhoven, The Netherlands
Data protection and ethical conduct of research Personal data on health is highly sensitive and our privacy thus guarded by national laws and regulations on privacy and ethics. Privacy adheres to the European Directive 95/46 EC. This WP will study and report legal and ethical barriers to cancer research in Europe and point to best practices to secure high standards of privacy and ethics maintaining the possibility for research, leading to better cancer control in Europe. A standing European committee supervising the use of joint European cancer registry data from a privacy and ethical point of view will be formed, building on a revised code of conduct for cancer registry research alone and linked to tissue banks, screening and other clinical data. Questionnaires to stakeholders, expert consultations and working groups will methods used. List of deliverables Potential impact WP 2 provides an overview of European legislation on cancer registration and associated research in order to define the code of best conduct. The mapping of data protection and ethical rules within Europe will be a major asset for conducting collaborative research, and will highlight discrepancies between countries within the EU which may ameliorate legislation and rules and strengthen cancer research across national borders. It establishes a permanent European committee on legal, ethical, and data protection issues, a body necessary for enhancing and expanding cancer research with genuine respect to the cancer patient and his/her privacy. Furthermore, a permanent international committee, consisting of experts close to the data, research questions and cancer control, will be an important knowledge base when revisions of EU directives on data protection and ethics are considered. WP Leader Hans H. Storm
Department of Cancer Prevention and Documentation Danish Cancer Society Strandblvd 49 DK-2100
Tel.: +45-35 257500
Denmark Involved in WP2 M. Arbyn, Scientific Institute of Public Health, Belgium D. Brewster, National Services Scotland NHS, UK M. Coleman, UK E. Crocetti, Registro Tumori Toscano (RTT), Italy D. Forman, UK T. Hakulinen, Finnish Cancer Registry, Finland A. Katalinic, ENCR/Institut für Krebsepidemiologie, Germany M. Rahu, Estonia S. Törnberg, Karolinska Sjukhuset, Sweden L. Tryggvadóttir, Icelandic Cancer Registry, Iceland Subcontractor: Medlaw Consult, Mr E-B. van Veen, The Netherlands
Workpackage 3 Tools for improving the quality, coverage and use of cancer registration data in Europe WP3 has two main objectives. The first deals with registration techniques, the second with registration policies.
For registration techniques, the aspects of quality and comparability of incidence data (as well as follow up data for calculating survival) will be focused on, through a census of existing practice in different European countries, and a number of working groups that will examine indicators, rules, standards and procedures. Appropriate comparisons with the North America setting (SEER) will be established.
For registration policies, the questions of extending the coverage (were absent), revising the coverage (its organization, when improvable), testing the representativeness, extrapolating in space (conditions of validity), improving the timeliness, improving the availability for the user, will addressed.
List of deliverables WP leader R. Zanetti
Director, Piedmont Cancer Registry Centro di Prevenzione Oncologica Via San Francesco da Paola, 31 I-10123
Tel.: +39-011 6333870
Italy WP3 Eurocourse Participants · K. Aben, IKO - Integraal Kankercentrum Oost, The Netherlands · C. Allemani, IRCCS Istituto Nazionale Tumori Milano, Italy
· E. Ardanaz, Insitituto de Salud Pública de Navarra, Spain · R. Bilbao, Basque Country, Spain · F. Binder-Foucard, Registre de Cancers du Bas-Rhin, France · M. Blettner, Inst. Of Medical Biostatistics, Mainz University and Mainz Cancer Registry Germany · A. Bordoni, Ticino Cancer Registry Switzerland · F. Bray, Cancer Registry of Norway, Norway · H. Brenner, Klinische Epidemiologie und Alternsforschung Deutsches Krebsforschungszentrum Germany · D. Brewster, Scottish Cancer Registry, UK · R. Capocaccia, Istituto Superiore di Sanità – Roma, Italy · D. Coza, Regional Cancer Registry of Cluj, Romania · R. De Angelis, Istituto Superiore di Sanità – Roma, Italy · F. Dwane, National Cancer Registry, Ireland · J. Ferlay, IARC, France · S. Ferretti, Ferrara Cancer Registry, Italy · D. Forman, IARC, France · J. Galceran, Tarragona Cancer Registry, Spain · A. Gavin, Ireland Cancer Registry Ireland · A. Gondos, Klinische Epidemiologie und Alternsforschung Deutsches Krebsforschungszentrum Germany · T. Hakulinen, Finnish Cancer Registry, Finland · B. Holleczek, Epidemiologisches Krebsregister Saarland, Germany · K. Innos, National Institute of Health Development, Estonia · M. Izarzugaza, Basque Cancer Registry, Spain · P. Kaatsch, German Childhood Cancer Registry, Germany · N. Larranaga, Basque Cancer Registry Victoria, Spain · M. Magi, Estonian Cancer Registry, Estonia · R. Martinez, Basque Cancer Registry, Spain · A. Miranda, ROR-Sul - IPOLFG Lisbon Portugal, Portugal · H. Møller, Thames Cancer Registry, UK · M. O'Callaghan, National Cancer Registry, Ireland · E. Paci, Tuscany Cancer Registry , Italy · M. Parkin, Clinical Trials Service Unit and Epidemiological Studies Unit, University of Oxford UK · R. Peris-Bonet, Childhood Cancer Registry, Spain · D. Robinson, Thames Cancer Registry, UK · S. Rosso, Piedmont Cancer Registry, Italy · L. Sacchetto, Piedmont Cancer Registry, Italy · R. Sankila, Finnish Cancer Registry , Finland · R. Schaffar, Registre Genevois des Tumeurs, Switzerland · I. Schmidtmann, Inst.Of Medical Biostatistics, Mainz University and Cancer Registry Germany · F. Sera, MRC Centre of Epidemiology for Child Health – London, UK · G. Smailyte, Lithuanian Cancer Registry, Institute of Oncology, Lithuania · A. Spitale , Ticino Cancer Registry, Switzerland · E. Steliarova Foucher IARC, France · C. Stiller, Childhood Cancer Research Group, UK · L. Tryggvadottir, Icelandic Cancer Registry, Iceland · E. Van Eycken, Belgian Cancer Registry, Belgium · R. Verhoeven, Comprehensive Cancer Centre South/ Eindhoven Cancer Registry The Netherlands · O. Visser, IKA - Integraal Kankercentrum Amsterdam, The Netherlands · V. Zadnik, Slovenian National Cancer Registry, Slovenia · M. Zakelj, Slovenian National Cancer Registry, Slovenia · R. Zanetti, Piedmont Cancer Registry. Italy · A. Znaor, Croatian National Institute of Public Health, Croatia
Workpackage 4 The development, analysis, harmonization and exchange of European cancer registry data for monitoring cancer control This WP will develop the operational mechanisms and analytic tools for collection, exchange and analysis of cancer registry data, through development of a quality-controlled data submission mechanism to manage incoming and outgoing European registry data and by developing the analytic capacity to produce, from this data, key statistics and reports on the cancer burden in Europe. Under the guidance of a broadly based Data Analysis and Exchange group and in collaboration with IARC, we will produce a public access dataset as well as a research dataset with more restricted access. We will publish guidelines and recommendations on the composition and the use of these datasets following a workshop to be held in 2011 and will also develop, with IARC, a user-friendly analysis and software tool for access to the data, as part a comprehensive programme of work on cancer intelligence. List of deliverables WP Leader H. Comber
National Cancer Registry Ireland
Cork Airport Business Park Kinsale Road
Tel.: +353-21 431 8014
Ireland Involved in WP4 M. Ana da Costa, Portugal E. Ardanaz, Instituto de Salud Pública de Navarra, Spain F. Bray, The Cancer Registry of Norway, Norway H. Comber, National Cancer Registry, Ireland R. Capocaccia, Instituto Superiore di Sanita, Italy Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands J. Ferlay, IARC, France I. Izarzugaza, Basque Cancer Registry Victoria, Spain M. Magi, Estonian Cancer Registry, Estonia H. Moller, Thames Cancer Registry, United Kingdom M. O'Callaghan, National Cancer Registry, Ireland M. Parkin, Cancer Research UK, United Kingdom S. Rosso, CPO - Center for Cancer Prevention, Italy E. Steliarova-Foucher, IARC, France
Workpackage 5 Interface of cancer registries with cancer screening programmes The specific aims of the work package are to develop standards of cancer registration (e.g., on registration of stage) essential for evaluation of cancer screening programmes; to specify screening related elements in the European data sets to be developed further based on current quality assurance guidelines for cancer screening programmes; and demonstrate practicability if the new standards in collaborative research projects. A work group will be established, continuation of data collection on screening elements will be planned for, a strategy towards regular data collection from screening registers proposed, and priority list of research projects based on linkages between screening and cancer registers will be produced. List of deliverables WP leader Dr. A. Anttila
Finnish Cancer Registry Cancer Society of Finland Pieni Rooberinkatu 9 P.O. Box 238 FIN-00131
Tel.: +358-9 135 331
Finland Involved in WP5 M. van der Aa, IKNO, The Netherlands Dr. A. Anttila, Finnish Cancer Society, Finland Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands D. Coza, Cluj Oncological Institut, Romania J. Fracheboud, Dept of Public Health Erasmus MC, The Netherlands L. von Karsa, IARC,ECN, France G. Lawrence, Birmingham West Midlands CR, United Kingdom R. Liisa, Finnisch Cancer Registry, Finland S. Lönnberg, FCR, Finland N. Malila, FCR, Finland B. Moller, Cancer Registry Oslo, Norway E. Paci, Tuscany Cancer Registry, Italy A. Ponti, CPO piemonte, Italy M. Roche, Oxford CR, United Kingdom G. Ronco, CPO, Italy S. Törnberg, Karolinska Sjukhuset, Sweden A. Vagoras, Lithuania P. Veerus, National Institute for Health Development, Estonia L. Voti, IARC, France
Workpackage 6 Interface between cancer registries and the evaluation of clinical care This workpackage explores the potential for comparative analyses of population-based clinical research of oncological care (often generating indicators) across Europe. It will describe variations in the process and outcomes of oncologic care, and adherence to best practice, as defined by European guidelines. Furthermore it will examine and report on linkage of cancer registry data with clinical databases and with country-specific guidelines of cancer treatment. The effective use of clinical information will improve quality of cancer care and clinical science. The main aims of this workpackage are to recommend on essential data items required for quality assurance and monitoring of cancer services and to enable quality of cancer care studies. Furthermore it will develop methods for more effective use of clinical data and registry indicators in evaluating cancer care with respect to guidelines. List of deliverables WP leader Prof. dr. J.W.W. Coebergh
Comprehensive Cancer Centre South Eindhoven Cancer Registry P.O. Box 231 NL-5600 AE
Tel.: +31-40 297 16 16
The Netherlands Involved in WP6 Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands R. Damhuis, IKR, The Netherlands Prof. J. Engel, Munich Cancer Registry of the Munich Cancer Center, Germany J. Faivre, France Dr. A. Gavin, Department of Health, Social Services and Public Safety, Northern Ireland L. Gill, United Kingdom L. Holmberg, Clinical Epidemiology London, United Kingdom/Sweden C.J.G. van den Hurk MSc, IKZ, The Netherlands I. Izarzugaza, Basque Cancer Registry Victoria, Spain Dr. M. Janssen, IKZ, The Netherlands G. Lawrence, Birmingham West Midlands, UK Dr. V. Lemmens, IKZ, The Netherlands R. Martinez Dr. L.V. van de Poll, IKZ, The Netherlands S. Rosso, Piedmont Cancer Registry, Italy MD R. Sankila, Cancer Society of Finland, Finland
Workpackage 7 Interface of cancer registries with biobanks tekst WP List of deliverables WP leader Prof. dr. J. Dillner
Department of Medical Microbiology Lund University Malmo University Hospital Entrance 78 S-20502
Tel.: +46-40 33 81 26
Sweden Involved in WP7 Dr. M. Arbyn, Scientific Institute of Public Health, Belgium R. Bilbao, Basque Foundation for Health Research and Innovation, Spain Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands Prof. dr. J. Dillner, Lund University, Sweden P. Hainaut, IARC, France K. Haller, University of Tartu, Estonia Prof. A. Metspalu, University of Tartu, Estonia MD R. Sankila, Cancer Society of Finland, Finland E. van Veen, Medlaw, The Netherlands
Workpackage 8 Dissemination and training This workpackage will provide the necessary infrastructure to deliver the outputs of workpackage 2 to 7 to the wider cancer research community via education and dissemination means. EUROCOURSE will provide key information on good practice in cancer registration, cancer intellligence and in the interfaces between the work of cancer registries, screening and clinical and laboratory-based research.The output will be disseminated to a large number of highly-experienced cancer registry professionals and their counterparts within collaborating organisations. This workpackage aims to exchange knowledge via journals, newspapers and the EUROCOURSE website. Furthermore it will prepare a structure for addressing education and accreditated training for cancer registry staff (and staff from collaborating organisations) and registries from new EU members in particular. List of deliverables WP leader Prof. dr. J.W.W. Coebergh
Comprehensive Cancer Centre South Eindhoven Cancer Registry P.O. Box 231 NL-5600 AE
Tel.: +31-40 297 16 16
The Netherlands Involved in WP8 Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands M. Patruleasa, SOFRECO Bucarest, Romania H.H. Storm, Danish Cancer Society, Denmark
Workpackage 9 The first European Cancer Control Summit The first European Cancer Control Summit intends to expand the ERA-NET beyond the consortium. The meeting will provide a key opportunity to realign priorities for future collaboration among ENCR members and in general stakeholders of cancer registration. The Summit will be based on the advances delivered in each of the eight work packages that lead up to this meeting. The aims of this workpackage are to provide an inclusive platform for all stakeholders in the field of cancer registration and to sketch out a common European strategy of cancer registration and use of registry data. The summit is intended to provide a highly visible pulic event at European level. It is expected that the event will attract the interest of an estimated 100 delegates, all of whom are stakeholders in European cancer control activities: European organizations, national and regional authorities, programme owners, cancer charities, patient groups and cancer registries. The Summit will be an opportunity to assess progress of the EUROCOURSE project. With the timing of the Summit a year before the close of EUROCOURSE it is intended to create an opportunity to look forward and ensure sustainability of the most important activities. List of deliverables WP leader Prof. dr. J.W.W. Coebergh
Comprehensive Cancer Centre South Eindhoven Cancer Registry P.O. Box 231 NL-5600 AE
Tel.: +31-40 297 16 16
The Netherlands Involved in WP9 Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands
Workpackage 10 Management of Eurocourse
This workpackage will provide the appropriate management structure that will ensure the accomplishment of the ERA-NET goals, within the time frame proposed. The necessary decision-making procedures will be set up and transparency ensured through good governance of the network. List of deliverables WP leader Prof. dr. J.W.W. Coebergh
Comprehensive Cancer Centre South Eindhoven Cancer Registry P.O. Box 231 NL-5600 AE
Tel.: +31-40 297 16 16
The Netherlands Involved in WP10 Dr. A. Anttila, Finnish Cancer Registry, Finland Prof. dr. J.W.W. Coebergh, IKZ, The Netherlands H. Comber, National Cancer Registry, Ireland J. Dillner, Lund University, Sweden C.J.G. van den Hurk, IKZ, The Netherlands H.H. Storm, Danish Cancer Society, Denmark R. Zanetti, Piedmont Cancer Society, Italy Subcontractor: FP-Tools, Eindhoven, The Netherlands
Eurocourse publications Eurocourse contributed to the following publications: WP2 Hakulinen T, Arbyn M, Brewster DH, Coebergh JWW, Coleman MP, Crocetti E, Forman D, Gissler M, Katalinic A, Luostarinen T, Pukkala E, Rahu M, Storm H, Sund R, Törnberg S, Tryggvadottir L. Harmonization may be counterproductive - at least for parts of Europe where public health research operates effectively. European Journal of Public Health Van Veen EB, Patient data for health research - A discussion paper on anonymisation procedures for the use of patient data for health research. Medlaw Consult, The Hague, October 2011, ISBN 978-90-75941-00-5 WP4 Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012, Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, Rosso S, Coebergh JWW, Comber H, Forman D and Bray F. European Journal of Cancer (accepted for publication 2013) WP5 Lönnberg S. Case-control studies for the evaluation of performance and age-specific outcome of organised cervical cancer screening Lönnberg S, Leinonen M, Malila N and Antilla A. Validation of histological diagnoses in a national cervical screening register. Acta Oncologica, 2012; 51: 37-44 Arbyn M (coordinator), Weiderpass E (professor of medical and cancer epidemiology) and Capocaccia R (head). Effect of screening on deaths from cervical cancer in Sweden. BMJ 2012;344:e804 doi:10.1136/bmj.e804 (Published 1 March 2012) Arbyn M, Castellsague X, De Sanjose S, Bruni L, Saraiya M, Bray F and Felay J. Worldwide burden of cervical cancer in 2008. Annals of Oncology 22: 2675-2686, 2011 Malila N, Palva T, Malminiemi O, Paimela H, Anttila A, Hakulinen T, Järvinen H, Kotisaari ML, Pikkarainen P, Rautalahti M, Sankila R, Vertio H and Hakama M. Coverage and performance of colorectal cancer screening with the faecal occult blood test in Finland. J Med Screen 2011; 18:18-23 Lonnberg S, Nieminen P, Kotaniemi-Talonen L, Kujari H, Melkko J, Granroth G, Vornanen M, Pietilainen T, Arola J, Tarkkanen J, Luostarinen T, Anttila A. Large performance variation does not affect outcome in the Finnish cervical cancer screening programme. Cytopathology 2011 Arbyn M, Antoine J, Valerianova Z, Mägi M, Stengrevics A, Smailyte G, Suteu O and Micheli A. Trends in cervical cancer incidence and mortality in Bulgaria, Estonia, Latvia, Lithuania and Romania. Tumori, 96: 517-523, 2010 Arbyn M, Ronco G, Cuzick J, Wentzensen N and Castle PE. Mini review: How to evaluate emerging technologies in cervical cancer screening? International Journal of Cancer: 125, 2489-2496 (2009) WP6 Thong MSY, Mols F, Stein KD, Smith T, Coebergh JWW and Van de Poll-Franse LV (revision submitted cancer), Population-based cancer registries for quality of life research; a work-in-progress resource for suvivorship studies? (2013) Van de Poll-Franse LV, Horevoorts N, Van Eenbergen M, Denollet J, Roukema JA, Aaronson NK, Vingerhoets A, Coebergh JWW, De Vries J, Essink-Bot ML, Mols F, The Profiles Registry Group, The patient reported outcomes following initial treatment and long term evaluation of survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts (2011) WP7 Pukkala E. Nordic Biological Specimen Bank Cohorts as Basis for Studies of Cancer Causes and Control: Quality Control Tools for Study Cohorts with More than Two Million Sample Donors and 130,000 Prospective Cancers. Joakim Dillner (ed.), Methods in Biobanking, Methods in Molecular Biology, vol. 675, DOI 10.1007/978-1-59745-423-0_3, Springer Science+Business Media, LLC 2011 Arbyn M, Antoine J, Mägi M, Smailyte G, Stengrevics A, Suteu O, Valerianova Z, Bray F and Weiderpass E. Trends in cervical cancer incidence and mortality in the Baltic countries, Bulgaria and Romania. Int. J. Cancer 2010 Vc2010 UICC Andersson K, Bray F, Arbyn M, Storm H, Zanetti R, Hallmans G, Coebergh JW, Dillner J. The interface of population-based cancer registries and biobanks in etiological and clinical research - current and future perspectives. Acta Oncol. 2010 Nov;49(8):1227-34. Langseth H, Luostarinen T, Bray F, Dillner J. Ensuring quality in studies linking cancer registries and biobanks. Acta Oncol. 2010 Apr;49(3):368-77. Arbyn M, Van Veen EB, Andersson K, Bogers J, Boulet G, Bergeron C, von Knebel-Doeberitz M, Dillner J. Cervical cytology biobanking in Europe. Int J Biol Markers. 2010 Jul-Sep;25(3):117-25 Methods in Biobanking Editor(s): Joakim Dillner, Bio Banking and Molecular Resource Infrastructure, Karolinska Institutet, Stockholm 205 02 Sweden, Series: Methods in Molecular Biology | Volume No.: 675 Print ISBN: 978-1-58829-995-6 -Chapter 3 Pukkala WP8 Znaor A, Van den Hurk C, Primic-Zakelj M, Agius D, Coza D, Demetriou A, Dimitrova N, Eser S, Karakilinc H, Zivkovic S, Bray F and Coebergh JWW. Cancer incidence and mortality patterns in South Eastern Europe in the last decade: Gaps persist compared with the rest of Europe. European Journal of Cancer (accepted for publication 2012) J. Ferlay, E. Steliarova-Foucher, J. Lortet-Tieulent, S. Rosso, J.W.W. Coebergh, H. Comber, D. Forman, F. Bray: "Cancer incidence and mortality patterns in Europe: Estimates for 40 countries in 2012" EJC 2012
Eurocourse deliverables Here we will share the project deliverables that are for public dissemination. WP 1: Questionnaire facility for ENCR; including topic of funding for registration and relevant research Documentation on needs for the future. (D 1.1)A blossoming Cancer 'Registree' is a joy forever. Kick off meeting (D 1.2) Analysis of funding and research of cancer registries in Europe. (D 1.3)Relation with clinical evaluation across Europe. Survey on best practice (D1.4)Especially with rspect to funding and research output Workshop 1 (D 1.5)Towards 10 commandments for Program Owners and Managers of population-based cancer registries. Workshop 2 (D1.6)In search of Program Owners of the cancer registry. Governance of population-based cancer registries by Program Owners and Managers Draft statutes of the European Society for Cancer Epidemiology (D 8.5) WP 2: Clarity on ethical principles and permanent EU committee on transnational projects Survey of current legislation and practices as reported from Stakeholders (D 2.1)Overview of European legislation and practices in cancer registration and research Revised confidentiality guidelines including ethical dimension (D 2.2)Guidelines on Confidentiality and ethics for population-based cancer registration and linked activities in Europe Best confidentiality practice and ethics dealing with biobank and registry data (D2.3)Eurocourse and ENCR Working Party Best confidentiality practice and ethics dealing with clinical and registry data (D 2.4)Eurocourse and Working Party of European Network of Cancer Registries (ENCR) Cancer registration, public health and the reform of the European Data Protection framework: Abandoning or improving European public health research? (D 2.5)Eurocourse and ENCR Working Party WP 3: Standardization and quality control of data collection and analysis Tools for improving the quality, coverage and use of cancer registration data in Europe Working group reports and surveys: data requisition methods, cancer staging, follow-up and survival (D 3.1) Workshop on national vs regional registration (D 3.2) Recommendations: data capture, screening, therapy, minimum dataset; ascertainment vs timelines (D 3.3) Working group reviews: completeness indicators, quality control measures (D 3.4) WP 4: Portal for common data entry for dissemination and transnational projects at IARC Public access dataset for routine situation analysis (D 4.1)This dataset was completed on July 1st 2011 (M27). It contains 18,413,386 individual cancer records from 99 European cancer registries in 26 countries, including 5 childhood cancer registries. The information held includes area of residence, age, sex, cancer type, date of incidence, vital status and cause of death. For some registries, which collect this information, there is data on stage at diagnosis and on treatment. Research dataset, only for participating cancer registries (D 4.2)This dataset was completed on July 1st 2011 (Month 27). Workshop on optimal use of the registry data in research (D 4.3)The development, harmonization, analysis and exchange of European cancer registry data Development of guidelines for the use of data and recommendations regarding specific public use datasets to be developed (D 4.4) Development of a European Cancer Observatory: the formation of a comprehensive programme of work on cancer intelligence (D 4.5)The European Cancer Observatory website www.eco.fr has been launched in September 2012. WP 5: Requirements to registries for evaluation of population-based screening European against Cancer: Optimisation of the Use of Registries for Scientific Excellence in research Recommendations on screening-related items in European data set (D 5.1) Recommendations on further development of standards and procedures of cancer registration relevant to cancer screening and related activities (D 5.2) Recommendations on collaborative projects of cancer registries and screening programmes worthy of technical, professional and logistic support. (D 5.3) Pan-European Network Meeting on evaluation of mass screening for breast and cervical cancer. (D5.4) Prospects for improvement in cancer screening and prevention - ECCG-ECN-EUROCOURSE WP 6: Value of population-based clinical evaluation: geriatric oncology, cost-effectiveness and quality of life Literature review, schematic overview, and impact assessment of population-based clinical research (D 6.1) State of the art of use of cancer recurrence data in evaluating cancer care (D 6.2) State of the art of effective use of registry indicators in evaluating cancer care (D 6.3) Workshop on clinical databases and treatment registries (D 6.4)Interface between Cancer Registries and Clinical databases proposed approaches to minimal datasets for comparative @ studies of cancer in the elderly and of determinants of survivorship. State of the art of use of clinical databases and treatment registries in evaluating cancer care (D 6.5)A first pan European inventory WP 7: Standardization of biospecimen collection and analysis of cancer biobanking European meeting on 'Bio-bank/Registry interfaces: working towards convergence' (D 7.1)The interface of population-based cancer registries and biobanks in etiological and clinical research - current and future perspectives Development of an integrated, standardized, minimal dataset of information on aetiology, individual data, pathology, treatment outcomes, complementary between biobanks and registries (D 7.2) Indentification of methods for accelerating data acquisition by registries immediately after diagnosis (D 7.3) Protocols and procedures for integrating cancer registries in translational reserach using bio-bank specimens (D 7.4) WP 8: Programme for dissemination and training Online reports: Newsflashes - regular updates of current activities and news within the Network (D8.1) Online reports: Cancer fact sheets, best practice, recommendations, inventory of publications, advanced course, contact lists of European registries (D 8.2) South East European Cancer Registries Report Eurocourse workshop WP8 (D 8.3)Towards more collaboration and greater visibility WP 9: European Summit and role of Registries Program Eurocourse Summit (D 9.1)2-day Summit with around 100 delegates. Summit report how to let 'Registrees' flourish and deliver fruits? (D9.2)Summit: outcomes and follow-up ERA-net: ENCR in the European context Brochure for stakeholders, policy makers (D 9.3)Including Strategy paper on the future of European Cancer Registration (M 9.1) WP 10: Eurocourse website This Eurocourse website (D 10.2) Eurocourse public reports: Report WP4 workshop April 2011 (D 4.3)
Impressive articles using Cancer Registry data Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. British Journal of Cancer (2012) 1-8 Hakulinen T. Harmonization may be counterproductive - at least for parts of Europe where public health research operates effectively. European Journal of Public Health (2011) Bastos J, Peleteiro B, Gouveia J, Coleman MP, Lunet N. (2009). The state of the art of cancer control in 30 European countries in 2008. International Journal of Cancer 126 2700-2715. Hiripi W, Gondos A, Emrich K, Holleczek B, Katalinic A. et al. Survival from common and rare cancers in Germany in the early 21st century. (2011) Annals of Oncology. doi: 10.1093/annonc/mdr131 Nakaya N, Bidstrup PE, Saito-Nakaya K, Frederiksen K, Koskenvuo M, Pukkala E, Kaprio J, Floderus B, Uchitomi Y, Johansen C. Personality Traits and Cancer Risk and Survival Based on Finnish and Swedish Registry Data. Americain Journal of Epidemiology Vol. 172, N0.4 2010 Maule M, Scelo G, Pastore G, Brennan P, Hemmink K, Olsen JH, Tracey E, Pukkala E, Weiderpass E, Brewster DH, Tamaro S, Chia KS, Pompe-Kim V, Kliewer EV, Tonita JM, Martos C, Jonasson JG, Merletti F, Boffetta P. Second malignancies after childhood concentral nervous system solid cancer: results from 13 cancer registries. International Journal of Cancer 2011 129:1940-1952 Cardis E, Krewski D, Boniol M, et al. Estimates of the cancer burden in Europe from radioactive fallout from the Chernobyl accident. International Journal of cancer 2006; 119; 1224-35 IACR report, International rules for multiple primary cancers, 2004 Rosso S, De Angelis R, Ciccolallo L, et al. Multiple tumours in survival estimates. Eur J Cancer 2009;45:1080-94. Gondos A, Holleczek B, Janssen-Heijnen M, et al. Model-based projections for deriving up-to-date cancer survival estimates: an international evaluation. International journal of cancer 2009;125:2666-72. Ferlay J, Parkin DM, Steliarova-Foucher E. Estimates of cancer incidence and mortality in Europe in 2008. Eur J Cancer 2010;46:765-81. Karim-Kos HE, de Vries E, Soerjomataram I, et al: Recent trends of cancer in Europe: a combined approach of incidence, survival and mortality for 17 cancer sites since the 1990s. Eur J Cancer 44:1345-89, 2008 Siesling S, van der Aa MA, Coebergh JW, et al: Time-space trends in cancer incidence in the Netherlands in 1989-2003. Int J Cancer 122:2106-14, 2008 Parkin DM. The evolution of the population-based cancer registry. Nat Rev Cancer 2006;6:603-12. Brewster DH, Coebergh JW, Storm HH. Population-based cancer registries: the invisible key to cancer control. The lancet oncology 2005;6:193-5. Janssen-Heijnen M, Coebergh JW, all a. Clinical Relevance of Conditional Survival of Cancer Patients in Europe: Age-Specific Analyses of 13 Cancers. JCO 2010:1-9. Exchange of knowledge about national programmes (WP1) Bastos J, Peleteiro B, Gouveia J, Coleman MP, Lunet N. The state of the art of cancer control in 30 European countries in 2008. International journal of cancer;126:2700-15. Engholm G, Ferlay J, Christensen N, Bray F, Gjerstorff M, Klint A, Kotlum J, Olafsdottir E, Pukkala E, Storm H. NORDCAN - a Nordic tool for cancer information, planning , quality control and research. Acta Oncologica 2010; 49: 725-36 Data protection and ethical conduct (WP2) Rahu M, McKee M. Epidemiological research labelled as a violation of privacy: the case of Estonia. International journal of epidemiology 2008;37:678-82. Steliarova-Foucher E, Kaatsch P, Lacour B, Pompe-Kirn V, Eser S, Miranda A, Danzon A, Ratiu A, Parkin DM. Quality, comparability and methods of analysis of data on childhood cancer in Europe (1978-1997): Report from the Automated Childhood Cancer Information System 2006; 42: 1915-51 van Veen EB. Obstacles to European research projects with data and tissue: solutions and further challenges. Eur J Cancer 2008;44:1438-50. Coleman MP, Demaret E. Cancer registration in the European community. International journal of cancer 1988;42:339-45. Boyle P, Autier P, Bartelink H, et al. European Code Against Cancer and scientific justification: third version (2003). Ann Oncol 2003;14:973-1005. Storm H, Brewster DH, Coleman MP, et al. Guidelines for confidentiality and cancer registration. British journal of cancer 2005;92:2095-6. Standardization and quality control (WP3) Crocetti E, Buzzoni C; AIRTUM Working Group. Italy is one of the European countries with the greatest population observed by cancer registries. Epidemiol Prev. 2010 Sep-Dec; 34(5-6):82. Population based Screening (WP5) Segnan N, Amaroli P, et al. Once-Only Sigmoidoscopy in Colorectal Cancer Screening: Follow-up Findings of the Italian Randomized Controlled Trial-SCORE Buys et al. Effect of screening on Ovarian Cancer Mortality. JAMA 2011:305:22-95 Tornberg S, Kemetli L, Ascunce N, Hofvind S, Anttila A, Seradour B, Paci E, Guldenfels C, Azavedo E, Frigerio A, Rodrigues V, Ponti A. A pooled analysis of interval cancer rates in six European countries Perry N, Broeders M, de Wolf C, Tornberg S, Holland R, von Karsa L. European guidelines for quality assurance in breast cancer screening and diagnosis Von Karsa L, Anttila A, Ronco G, all a. Cancer screening in the European Union: European Commission; 2008. Cervical Cancer Screening Andrae B, Kemetli L, Sparen P, et al. Screening-preventable cervical cancer risks: evidence from a nationwide audit in Sweden. Journal of the National Cancer Institute 2008;100:622-9. Anttila A, von Karsa L, Aasmaa A, et al. Cervical cancer screening policies and coverage in Europe. Eur J Cancer 2009;45:2649-58. Ronco G, van Ballegooijen M, Becker N, et al. Process performance of cervical screening programmes in Europe. 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Presentation EU CRs CRs presenting themselves CR Austria CR Estland CR Finland CR Iceland CR UK Mass Screening CR Finland Output of CRs Netherlands CR: publications 2005-2009 EU CRs: International publications 2000-2009 Danish CR: publications 2005-2009
Related EU funded projects EUROCARE (European Cancer Registries 'Study on Cancer Patients' Survival and Care) is an international collaborative study on the survival of cancer patients in Europe coordinated by the Institute Nazionale per lo Studio e la Cura del Tumori (Milan, Italy). EUROCHIP (European Cancer Health Indicator Project) is a multidisciplinary project, aiming to develop strategies for information exchange and responses to cancer, with special emphasis on major European cancer inequalities. The third project is running at this moment EUROCHIP-3. For further information please see the website for EUROCHIP-1 and EUROCHIP-2. Eurocadet contributes to the prevention of cancer in Europe by studying the diversity within Europe in cancer risk factor prevalence and cancer occurence. Furthermore, it indentifies effective preventive strategies and makes estimations of the effects of successful implementation of effective strategies. One of the key aspects of the project is the utilisation of the Prevent software. The software models the future incidence and mortality of cancer, depending on the assumed risk factors, such as smoking, alcohol consumption, obesity, physical activity, fruit and vegetable consumption and socio-economic status. EUNICE (EU Network for Information on Cancer) aims to compile, compare, analyse and disseminate information relevant to monitoring the status of cancer burden in the European populations, as well as planning and evaluation of cancer control measures at national and EU level. EPIDERM (European Prevention Initiative for Dermatological Malignancies) aims to acquire and disseminate knowledge on skin cancers in relation to their occurrence, risk factors, treatments and cost of illness, in order to develop prevention and risk reduction strategies and best practices recommendations. CoCanCPG (Coordination of Cancer Clinical Practice Guidelines in Europe) is a Coordinated Action under the ERA-Net scheme and coordinated by the French National Cancer Institute. The CoCanCPG consortium consists of 16 institutional partners from 11 countries, involved in the funding and management of Cancer Clinical Practice Guidelines (CPG) programmes. RARECARE (Surveillance of Rare Cancers in Europe) assesses the quality and comparability of data on rare cancers across European countries. HAEMACARE (Cancer Registry Based Project on Haematologic Malignancies) aims to revise the haematologic malignancies coding procedures used by cancer registries, ensuring strict adherence to the International Classification of Diseases for Oncology (ICD-O) codes, and by making them consistent with the various classification of diseases categories currently used by clinicians across the Union. PanCare is a European network aiming at an improvement of the conditions of survivors of cancer in childhood or adolescence. ECCG-ECN (European Cooperation on Development and Implementation of Cancer Screening and Prevention Guidelines) The primary objective of the European Cancer Network (ECN) for Screening and Prevention is to promote best practice in screening and complementary methods of primary cancer prevention in Europe through pan-European and international cooperation and collaboration in development and implementation of quality assurance guidelines.
NEWS Newsletter 6 - May 2013 Foreword by Jan Willem Coebergh: Long live Eurocourse The Eurocourse project has fullfilled its mission four years after its start in April 2009 and its preparation started early 2007 when the financial sky seemed without limits. Was it so complicated that 6 years were needed of scientific collaborative work and negotiations by hundreds of collaborators from more or less all EU member states and a few associated members of the EU in order to show that they could be part of the European Research Area? Yes it was, because of the intriguing contradiction of the application of a relatively inexpensive simple population-based epidemiological methodology with an apparently straightforward pathological and clinical oncologic basis. But here coincides its efficiency with the diversity and complexity underpinned by hundreds of diagnoses, classifications and guidelines carried out by so many different coalitions of clinicians, being so different across the various age strata from cancer in childhood to in the very elderly. And this all takes place - in a more and more unified oncologic Europe with so many clinical and scientific congresses and with such advanced ever changing medical and information technologies. But indeed striking heterogeneity appeared in the regional and national embedding including the financing and governance of the 175-225 cancer registries, reflecting the cultural, social, medical and economical values and realities of each country. But also within each, especially larger, country where - except the UK - at most one third of the population is currently covered by functioning registries anyway. And this variation (some say inequalities) seemed to become rather larger than smaller, also through the strain delivered by the financial crisis that struck in 2008 and is far from over for this unique but rather vulnerable network which provides so much unique and essential information on cancer and from cancer surveillance. Hundreds of young scientists who should fulfill careers in cancer surveillance currently don’t succeed because of this. They should serve cancer prevention and be improving quality of care both process and outcome for the 15-20 million, partly ex-cancer patients alive (as many as there are jobless people in Europe) and indeed the variation in care for the about 3.5 million newly diagnosed patients and almost 2 million deaths, still staggering amounts despite and thanks to lower cancer mortality rates. They should supervise the mass screening programs for cervical, breast and colorectal and possibly lung and prostate cancer in the near future, study patterns of care and survival of the two thirds of cancer of older patients who are not studied in clinical trials. In other words, these are the challenges ahead for which Eurocourse brings forward the ingredients. Clinical oncologic care cannot do without this and thus needs cancer epidemiology as much as anything else to serve the soon 20 million cancer patients. For that reason Eurocourse may also lead to the foundation of the European Society for Cancer Prevention and Epidemiology. Jan Willem Coebergh Coordinator at the Comprehensive Cancer Centre South (IKZ) Eurocourse T-shirt to stimulate development and use of Cancer Registry Newsletter 4 - Eurocourse Summit - November 2011 From the coordinator Since March 2011 extensive activities have taken place within the various workpackages of the Eurocourse project itself, more or less as planned and including completing the, now by the EU approved, interim-report. But these activities were partly also related to the dynamics of both, often elusive E-health, as well as the increasingly perceived need for more elaborate quality assessment of cancer management. Clinical databases are popping up everywhere at national level and sometimes also getting European dimensions. Methodological and efficiency considerations should lead us here into synergy. The workpackage results are listed on the various poster-format texts attached to this letter and are clearly visible in the program of the ECCO-Eurocourse Oncopolicy Summit meeting of November 23 and 24, (see program on www.eurocourse.org). This meeting is not only intended to present our findings and recommendations. But the meeting of all together about 110 people, experts and policy makers, will however also stimulate the dialogue with our stakeholders, nicely represented in the audience as well as visualized in a modern version of the registration tree. This tree can only blossom and give fruits when getting enough sun and water and the roots being in fertile – clinical- ground. See our website for the tree figures (Eurocourse Summit/ Documents for Summit). With respect to the Eurocourse project the following: Especially, the workshop in IASI (Rumania) for 12 registries (and their program owners and managers) in May was very good for grasping the enormous problems oncological care is having in the southeast of Europe, given all the medical challenges and the shift in infrastructure from traditional Vienna school of medicine to modern molecular medicine. So, we are now getting into the final phase of Eurocourse, still another 6 months to go and able to accommodate fresh ideas. Without changes in medical practice and by the epidemic nature of most cancers there wouldn’t be reasons to invest in registration at all, preferably as neutral and valid as possible. Jan Willem Coebergh Coordinator
See eurocourse Summit posters. 15 July 2011 WP2 Open letter to decision makers: Data protection directive Newsletter 3 - March 2011 From the coordinator > Two years have passed since the start of Eurocourse, meant to address the opportunities, requirements, shortcomings and problems of population-based cancer registries. Eurocourse also explores the strengths and best practices of the registries for all beneficiaries (patients and doctors), stakeholders and the cancer research community (ERAnet). The main purpose is a basis for a sustainable development and better use of (more, hopefully) cancer registries across Europe, so cancer epidemics can be confronted and quality of oncological care can be described and improved. Read on >> WP1 Eurocourse meets Stakeholders: good governance needed > We will meet with experienced stakeholders of Cancer Registries in Europe and examine together matters of future interest i.e. opportunities to improve the role of the registries in cancer control. Generally, information from cancer registries on frequency and prognosis is an indispensable requisite for any National approach/exploration to Cancer care Planning. Read on >> WP1 Results on Survey ‘Overview of Cancer Registration Practices’ > A total of 103 European Cancer Registries (CRs) participated in the survey "Overview of Cancer Registration Practices". The survey was conducted jointly by the EUROCHIP-3 and the EUROCOURSE project and supported by the ENCR. The survey concerned registry details, data sources, collected items, guidelines and the role of care evaluation within the registry. All European CRs received an invitational letter through email by the ENCR. Read on >> WP2 Data protection and ethics > This WP study and will report legal and ethical barriers to cancer registry based and affiliated research in Europe. The aim is to point to best practices to secure high standards of privacy and ethics maintaining the possibility for research, leading to better cancer control in Europe. A revised code of conduct for cancer registration and cancer registry research alone and linked to tissue banks, screening and other clinical data is under development. Read on >> WP3 Updating the techniques, redefining the policies > To determine the set of collected data, a large list of circumstances and causes of possible incompleteness has been defined. Different recommendations for improving the timeliness have been drafted. Join WP3-4 WG on Data Harmonization. This task is being developed in connection with WP4 (the EuroCIM2 database) through a joint WP3-4 WG, structured in sub tasks: Read on >> WP4 Web portal and use of data > A web portal for the common submission of cancer registry data to a range of European projects (e.g. EUROCIM, EUROCARE) has been developed and is hosted at IARC. Data from 102 registries in 25 countries has been submitted to the portal. Data can now be submitted by registries at any time, and as often as is convenient to them. The portal submission also allows for administering questionnaires, surveys, polls etc. to registries across Europe and offers an unprecedented opportunity for annual live updating of the common European cancer database. Read on >> WP5 Screening: recommendations for cancer registries > The WP5 work group has drafted recommendations to further develop cancer registry information and procedures in order to evaluate and monitor systematically the currently on-going cancer screening programmes (for breast, cervix uteri, and colorectal cancers). Read on >> WP6 Use of cancer registry data in clinical databases > Based on best practices an overview is emerging on possibilities (and pitfalls) for the use of cancer registry data. Focus for more in depth-exploration will be on elderly, clinical databases and quality of life, with special attention for colo-rectal cancer and lymphomas, as registries are in a unique position to provide such information. Read on >> WP7 Interface with biobanks > The interface of cancer registries and biobanks Lead Experts in cancer biobanking, cancer registration and biobank-based cancer research have collaborated to analyse the major strengths and shortcomings of the current infrastructure, to describe common quality standards for cancer biobanking and the linkage of biobanks with cancer registries to identify the biobank-based study bases. Read on >> WP8 Development for South-Eastern Cancer Registries > Experts of cancer registries in South-East Europe will gather to determine the challenges and pitfalls of starting and maintaining a qualified cancer registry. During the work shop the work package leaders will discuss the conditions for cancer registries and the use of data for cancer control. Regional experts can still apply to participate. Read on >> WP9 Eurocourse Summit > The Eurocourse Summit on the role of Cancer Registries in cancer Control will be held at the ECCO-Oncopolicy meeting in November 2011 in Brussels. It will be organized together with ECCO and the European Academy of Cancer Scientists. Together with a variety of stakeholders Cancer registry program owners and managers will be able to listen and discuss the use and future support of the cancer registries. Read on >> Agenda 2011 Please click for agenda. Newsletter 2 - May 2010 From the Project Coordinator > A year has passed since the start of EUROCOURSE. The workpackages (WP) 1,2,3,4,5, 7 and 10 started their work and WP 6, 8 and 9 are taking off. The website is being filled. Collaboration with EUROCHIP and ENCR has not only successfully resulted in a common questionnaire for the registries, but also in a permanent electronic archive of information to be continuously updated. The registries will thus become better linked and this will finally result in a cross-european database of cancer patients which allows for hundreds of comparative studies. What would registries be without epidemiological and oncological change? Nothing and let us therefore follow or even anticipate the change. READ ON >> WP1: Exchange of knowledge about national programmes > This WP provides the infrastructure for regular registry questionnaires to make ‘things’ more transparent and illustrate divergence. A gateway will be set up at IARC. Specifically, it will provide comparative insights for registries into their funding structure for registration and research output in the various domains: Prognosis, Quality of care, Quality of Life and Prevention (primary and mass screening) on a regional, national and/or European scale. We cooperated closely with the ENCR SC and IARC (hosting the registry data of Ca Incidence in 5 Continents), and Eurochip WP5. The questionnaire was sent around on May 4. READ ON >> WP2: Data protection and ethical conduct of research > This WP will study and report legal and ethical barriers to cancer research in Europe and point to best practices to secure high standards of privacy and ethics maintaining the possibility for research, leading to better cancer control in Europe. A revised code of conduct for cancer registration and cancer registry research alone and linked to tissue banks, screening and other clinical data will be developed. READ ON >> WP3: Tools for improving the quality, coverage and use of cancer registration data in Europe > With respect to the tasks 3.1 (data harmonization); 3.2 (completeness and timeliness); 3.4 (quality of follow-up data); 3.5 (expansion of the geographical coverage), 3 Working Groups (WG) have been activated. The first meetings are taking place and specific tasks have been divided among WG members. READ ON >> WP4: The development, analysis, harmonization and exchange of European cancer registry data for monitoring cancer control > The aims of this WP are “the development, harmonization, analysis and exchange of European cancer registry data”. Four working groups have been set up, the data gateway is ready for use and a meeting about data submission and quality control has been planned. READ ON >> WP5: Interface of cancer registries with cancer screening programmes > WP 5 examines the requirements of registries in the evaluation of population-based screening. The second meeting of the work group takes place on 15 March in IARC in order to prepare the recommendations and other deliverables of the project. Furthermore, a pan-European network meeting will be organised in Warsaw. READ ON >> WP6: Interface between cancer registries and the evaluation of clinical care > WP6 focuses on the value of population-based clinical evaluation where cancer registries can contribute in relatively new domains. A Working Group meeting in september will discuss good practices and assess the major challenges ahead, based on expectations and current literature. READ ON >> WP7: Interface of cancer registries with biobanks > This WP explores possibilities for standardization of biospecimen collection and analysis of cancer biobanking at the population level, i.e. using Cancer Registries. There have been two Working Group meetings, the report of these meetings resulted in an article in Acta Oncologica entitled ‘Ensuring quality in studies linking cancer registries and biobanks’. READ ON >> WP8: Dissemination and training > This WP will develop a programme for dissemination of good practice and training in cancer registration and research using cancer registry data. The list of exemplary literature will be composed. Workshop will be prepared in May 2011 in cooperation of our Romanian partner, i.e. the experienced cancer registry in Cluj (supported by the Ministry of Health), IARC in Lyon and the Comprehensive Cancer Center South (IKZ) in Eindhoven. The content of the workshop is currently being discussed. READ ON >> WP9: The first European Cancer Control Summit The deliverable of WP 9 is the EUROCOURSE Summit for all stakeholders in European Cancer Control activities. At the summit the results of the EUROCOURSE project will be presented and we will show plans for sustainable collaboration and strategies for use of cancer registry data in the future. We intend to organise this public event in November/December 2011, 4 months before the end of Eurocourse. This will provide an opportunity for using the summit proceedings in the final report. WP10: Project coordination > The EB meets every month in a telephone conference. Coordination tasks are fulfilled by the Comprehensive Cancer Centre South (IKZ) in Eindhoven. READ ON >> First Eurocourse related article published 20-02-2010 - The first EUROCOURSE related article has been published (online) in Acta Oncologica: 'Ensuring quality in studies linking cancer registries and biobanks' by H. Langseth, T. Luostarinen, F. Bray and J. Dillner. It is a report from Work package 7. Finish of the RARECARE project 20-02-2010 - The RARECARE project, an EU project related to EUROCOURSE, finishes on the 31st of March 2010 and we would like to draw attention to the achievements: the production of a List of Rare Cancers, Technical Report and Technical Report Annex. All documents are accessible on the project’s website by clicking the links “rare cancers” and “rare cancers indicators” respectively. First EUROCOURSE newsletter for participants 23-12-2009 - Today the first EUROCOURSE news letter has been sent to participants. Interview Hans Storm 07-09-2009 - Hans Storm was interviewed for PODIUM. The interview is entitled 'The State of Denmark'. Storm spoke to EJC about a recent report from the Danish Commission on Prevention Priorities which is being widely debated in the Danish press. Read interview (start at page 1724) Interview Jan Willem Coebergh 20-04-2009 - Jan Willem Coebergh was interviewed for PODIUM. The interview is entitled 'Cancer Controle in Europe with Professor Jan Willem Coebergh'. The interview was done because the new issue on the European Journal of Cancer on Cancer Surveillance is now out. Read interview
Agenda Next meetings 2013:
- Next EB teleconference: Presentations EUROCOURSE will be presented: 2013: 27 September - 1 October 2013: ECCO EUROCOURSE was presented: 28 September - 2 October 2012: ESMO, Vienna 19 - 20 September 2012: European Netwerk of Cancer Registries (ENCR) general meeting 17 - 19 September 2012: Int. Ass. of Cancer Registries (IACR), Cork 7 - 10 July 2012: EACR, Barcelona 2 July 2012: EPAA Brussels 20 - 21 June 2012: European Partnership Against Cancer, Rome 15 - 17 June 2011: NCIN/UKACR conference: Eurocourse session 23 - 27 Sept 2011: ECCO/ ESMO, Stockholm 2-6 April 2011: AACR meeting in Orlando 12-14 October 2010: IACR Meeting, Yokohama 17-18 June 2010: NCIN/UKACR Meeting, Birmingham 9-11 June 2010: Scandinavian Cancer Registries Meeting, Faroe Islands Poster 12-14 May 2010: GRELL meeting, Toledo, Spain 30 September to 3 October 2009: European Health Forum Gastein 24 September 2009: ECCO Berlin, poster presentation, 9.00 - 12.00 hours, poster board 095 (abstract book number 3.500) Eurocare Study Group meeting, Genoa, Italy Presentation 20-9-2012 Steering Board meeting Cork, Ireland 19-9-2012 WP8 meeting Cork, Ireland 22-3-2011 Steering Board meeting Lyon, France 15-11-2010 Executive Board meeting Amsterdam, the Netherlands 18-03-2010 Steering Board meeting, Amsterdam, The Netherlands 07-11-2009 Executive Board Meeting, Turin, Italy 07-04-2009 Steering Board Meeting, Lyon, France
Contact Name * E-mail * Message Fields marked with an * are required. Comprehensive Cancer Centre the Netherlands (IKNL)
Corina van den Hurk, PhD
PO Box 231 5600 AE
Eindhoven, The Netherlands
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unsubscribe from our newsletter Fields marked with an * are required. Volume 1 - December 2009 Volume 2 - May 2010 Volume 3 - March 2011 Volume 4 - November 2011: Summit Short newsletter: update August 2012
EUROCOURSE Summit The Eurocourse Summit was held on 23-24 November in Brussels european cancer control summit on the role of cancer registries Their unique and diverse role in supporting cancer prevention and management in the EU 23-24 November 2011 Renaissance Hotel, Brussels, Belgium EUROCOURSE, an EU-funded Seventh Framework Programme (FP7)
project, has been a welcome boost for European population-based
cancer registries and their programme owners since 2009,
benefitting both current and future cancer patients. The domains dealt with in this 3-year project have been wide-ranging: issues such as confidentiality, the dissemination of best practise, improving collaboration through ERA networks, biobanking in translational research and support for European comparative studies and mass screening programmes all aim to improve and progress registry coverage in Europe. ECCO – the European CanCer Organisation, is delighted to have organised this European Cancer Control Summit on 23-24 November in Brussels, together with the Executive Board of Eurocourse, the Steering Committee of the European Network of Cancer Registries (ENCR) and the InternationaI Agency for Research of Cancer (IARC). Cancer registry funding organisations, epidemiological and clinical researchers, programme owners and managers joined policy-makers and patient advocates to discuss the value of high-quality information on cancer in Europe, particularly in terms of the development, analysis, optimal use and exchange of European cancer registry data at this high-level meeting. This oncopolicy summit has outlined the need for more harmonisation and intensive use of comprehensive data and research to ensure better future cancer control and thus alleviate the burden of cancer across the EU. For any queries, please kindly email firstname.lastname@example.org or email@example.com. Prof. Jan-Willem Coebergh, EUROCOURSE Project Coordinator and Prof. Michael Baumann, ECCO President
Summit documents Please find below the presentations (in the order of the program; find program below), posters and some general documents of the Eurocourse Summit . Presentations 1_1 Celis 1_2 Coebergh 1_3 Loo 1_5 Waldman 1_5 Waldmann 1_7 Sullivan 1_8 Forman 2_1 Rosso 2_2 Parkin 2_3 Coebergh 2_4 Siesling 2_5 OReilly 2_6 Poll 2_7 Velikova 2_8 Denis 3_2 Zanetti 3_3 Storm 3_4 Veen 3_6 Comber 3_7 Capocaccia 3_8 Gondos 4_1 Coebergh 4_2 Lemmens 4_3 Green 4_5 Velde 4_6 Audisio 4_7 Hofstaedter 5_1 Anttila 5_2 Karsa 5_3 Chil 5_4 Ponti 5_5 Auvinen 6_2 Tryggvadottir 6_3 Znaor 7_1 Dillner 7_2 Pukkala 7_3 Albreht 7_4 Sant 7_5 Hjorth 7_6 Rosso Posters ECO.pdf Eurecca.pdf Eurocare.pdf EUROCHIP WP5.pdf EUROCHIP-3.pdf Eurocourse EB.pdf Eurocourse overview.pdf Eurocourse WP1 stakeholders.pdf Eurocourse WP1.pdf Eurocourse WP2 guidelines.pdf Eurocourse WP2 survey.pdf Eurocourse WP3.pdf Eurocourse WP4 CR data.pdf Eurocourse WP4 portal.pdf Eurocourse WP4 user survey.pdf Eurocourse WP5.pdf Eurocourse WP6 clin databases.pdf Eurocourse WP6 clinical use.pdf Eurocourse WP7.pdf Eurocourse WP8 SE EU.pdf Migration.pdf Rarecare.pdf General documents Please find below some general documents related to the Eurocourse Summit. Summit Program Cancer Registration Tree Manual Cancer Registration Tree 10 commandments Programme Owners 18-11-2011 Eurocourse Summit instructions for speakers Open letter to decision makers: Data protection directive (WP2)