2016 - Joining forces for better cancer registration in Europe

The JRC and the ENCR organised the 2016 ENCR Scientific Meeting and General Assembly, from 5-7 October in Baveno, Italy. The purpose of this bienial meeting was for European cancer registries to share research findings, discuss cancer registration issues, exchange ideas and best practices, network, present epidemiological work based on cancer registry data and to meet with the ENCR Steering Committee.

Some 170 European Cancer Registry representatives as well as researchers, epidemiologists and clinicians all gathered together to attend this event. With 36 oral presentations, 50 posters and three high-level keynote speeches, this scientific exchange during this event superseded all expectations. Moreover, the JRC launched its newly developed software for data quality checks, the software is freely available to all registries and the training workshop was attended by about 50 participants. This comprehensively innovative software will enhance the harmonisation of cancer data. The exchange of best practices and the networking was unprecedented and this was a milestone for cancer registration in Europe.

Please find on this page all the documents collected during the 2016 ENCR Scientific Meeting and General Assembly. Presentations are available for download if permission has been granted by the authors.

Please download here the booklet of the ENCR Scientific Meeting and General Assembly.

Detailed Programme
Please download here the detailed programme of the ENCR Scientific Meeting and General Assembly.

Oral Presentations
Opening Ceremony
Ciarán Nicholl (EC JRC), Alexander Katalinic (ENCR)
1st Scientific Session - Cancer burden in Europe: incidence, mortality, survival and prevalence
Moderators: Freddie Bray, Nadia Dimitrova and Manola Bettio
Invited Lecture: Roberto Zanetti (International Association Cancer Registries)
Future developments in cancer registration
Survival from cancer in the North region of Portugal - Results from the first decade of the Millennium  Luis Antunes
The burden of rare cancer among adults in Austria, 2000-2012   Monika Hackl
Rare cancers prevalence in Europe: the RARECAREnet project   Sandra Mallone
Trends in incidence of childhood cancer in Switzerland, 1985-2014   Matthias Schindler
Time trends and spatial patterns in the mesothelioma incidence in Slovenia, 1961-2013   Vesna Zadnik
Ethnic differences in the incidence of cancer in Norway   Kirsti Vik Hjerkind
Cancer incidence trends in Ukraine, 2002-2012   Anton Ryzhov
2nd Scientific Session - Cancer registries and evaluation of cancer care (1)
Moderators: Alexander Katalinic, Hans Storm and Giorgia Randi
Breast cancer screening effectiveness in Portugal central region  Joana Bastos
Measuring and reporting quality of care at the Belgian cancer registry: pivotal steps of an integrative quality system   Liesbet Van Eycken
Indicators of long-term survival and cure of cancer   Luigino Dal Maso
Monitoring care for female breast cancer patients in N. Ireland (NI) diagnosed 2012 (comparisons to 1996, 2001 and 2006)   Victoria Cairnduff
How European cancer registries can contribute in the assessment of quality of care for cancer patients?   Luciana Neamtiu
3rd Scientific Session - Cancer registries and evaluation of cancer care (2)
Moderators:Maria Dolores Chirlaque, Andrea Bordoni and Francesco Giusti
Invited Lecture: Francesco de Lorenzo (Federation of Cancer Patients Organisations)
Patient attitudes to monitoring and use of their cancer data in cancer research
Patterns of care and cost profiles of cancer patients in Italy: the EPICOST study  Silvia Francisci
The volume effect in paediatric oncology: a population based study  Gemma Gatta
Delay in diagnosis and initiation of breast cancer treatment in Belgium   Liesbet Van Eycken
The role of cancer registries in the evaluation of rare cancers care: the joint action on rare cancers   Annalisa Trama
A trans-cultural European Deprivation Index for studying social determinants of cancer incidence and survival in Europe   Guy Launoy
Faking it: Building a Simulacrum of non-identifiable modelled cancer data to support research   Cong Chen/
Sally Vernon
4th Scientific Session - Methods and measures of cancer registry data quality
Moderators: Harry Comber, Carlotta Buzzoni and Roisin Rooney
Primary brain and central nervous system tumours diagnosed in Girona (Spain) in 1994-2013  Rafael Marcos-Gragera
Completeness and validity of data in the Finnish Cancer Registry   Nea Malila
Completeness of registration in the SCCR as estimated from data exchange with regional cancer registries in Switzerland   Shelagh M Redmond
The impact of under-reporting of cases on the estimates of childhood cancer incidence and survival in Estonia   Keiu Paapsi
Impact of socioeconomic status on breast cancer care patterns and survival: the Italian high resolution study results   Francesca Di Salvo
Cancer incidence rates and Benford’s law: a useful liaison   Emanuele Crocetti
5th Scientific Session - Statistical methods and software tools
Moderators: Ana Miranda, Freddie Bray and Lydia Voti
Evidence-based toolkit of spatial epidemiology and analysis to enhance cancer surveillance  Dimitra Sifaki-Pistolla
Shared mortality from liver cancer and type 2 diabetes mellitus in Puglia   Enzo Coviello
The potential biases for interpreting patients’ net survival rate using cancer registries: a literature review   Ayako Okuyama
CanStaging: a cancer staging tool facilitating tumour staging into the future–planned developments and enhancements   Colin Fox
Comparing survival between Belgian haematopoietic stem cell transplant centres using a model based on pseudo values   Gilles Macq
Official/main terms, related terms and conversion between different classifications–renewing the coding manual   Siri Larønningen
ENCR General Assembly
Welcome and report on ENCR-JRC activities from 2014-2016  Alexander Katalinic
Towards a European cancer information system: the Data Quality Checks software, the Portal development, the Data Visualization tool


ENCR Steering Committee

Status of the 2015 ENCR-JRC Call for Data and ENCR-JRC project
New data protection regulation and impact on cancer registries
Results from the feedback survey to cancer registries
General discussion   ENCR members
Conclusions   Alexander Katalinic
6th Scientific Session - Cancer registries and clinical data
Moderators: Hans Storm, Harry Comber and Raquel Carvalho
Invited Lecture: Kathy Pritchard-Jones (University College London)
Childhood cancer outcomes research:opportunities for integrating clinical and population based cancer registry efforts
On the way to a comprehensive cancer registration for Germany  Alexander Katalinic
Electronic reporting of clinical notifications to the Cancer Registry of Norway  Siri Larønningen
Comparison of the old method of record linkage with the new ‘system break free’ method at the Cancer Registry RLP (D)-

  Katharina Emrich

Quality of life according to trial participation among Hodgkin lymphoma survivors: an IKNL-EORTC joint study

  Melissa Thong

Collecting clinical and epidemiological data on pancreatic cancer across Europe: PancreOs, a multidisciplinary project   María-Dolores Chirlaque
Survival differences in Hodgkin lymphoma patients treated inside and outside clinical trials–An EORTC-IKNL joint study

  Lifang Liu

Poster Presentations Theme: Cancer burden in Europe
Mari-Liis Zimmermann Recent trends in cancer incidence, mortality and survival in Estonia
Anne Cowppli-Bony Survival of solid cancer patients in France, 1989-2013: a study from FRANCIM registries
Nadezda Lipunova Education predicts cervical cancer survival: a Lithuanian cohort study
Eleni Petridou Incidence and time trends of childhood lymphomas in 14 Southern and Eastern European
cancer registries and SEER, US
Eleni Petridou Incidence, time trends and survival of childhood pilocytic astrocytomas in Southern-Eastern Europe and SEER, US
Maria José Sánchez Pérez Cancer-survival in Granada (South Spain), 2004-2008: estimates for five major cancers
Klaus Kraywinkel Comparison of thyroid cancer incidence rates in Austria, Switzerland and Germany
Eleni Petridou Childhood lymphomas: geographic and age-specific disparities of mortality & survival in Southern-Eastern Europe and US
Eleni Petridou Survival of childhood chronic myeloid leukemia: determinants and disparities between Southern-Eastern Europe & the US
Eleni Petridou Second malignancies following leukemia diagnosis: preliminary results from the 20-year nationwide registration in Greece
Mario Šekerija Trends in prostate cancer incidence (1968-2013) and mortality (1960-2014) in Croatia: a joinpoint regression analysis
Ofelia Suteu Incidence trends and survival of skin melanoma and squamous cell carcinomas in Cluj County Romania
Rajko Strahinja Cancer incidence in young people in Montenegro, 2013 - Where are we comparing with the region?
Anna Maria Nannavecchia Thyroid cancer in Puglia: heterogenity of incidence and mortality in four provinces
Seyed Mohsen Mousavi Cancer risk in Basel by municipality and district: a population-based cancer registry 1981-2010
Monika Hackl Trends in incidence, survival and mortality of childhood and adolescent cancer in Austria, 1994-2011
Dimitra Sifaki-Pistolla Lung cancer and annual mean exposure to outdoor air pollution in Crete, Greece
Emanuele Crocetti Cancer registries should additionally provide information on cancer incidence geographical variability
Laura Botta Bayesian estimates of incidence rates and number of cases by country for the rare cancers in Europe
Meike Ressing Incidence of lip malignancies in Germany–Data from nine population-based cancer registries
Camelia Nicoleta Claici Sustaining progress towards early detection of cervical cancer in Romania
Theme: Cancer registries and evaluation of cancer care
Giulio Barigelletti Citizens’ initiative for epidemiological study of cancer disease in the VCO province
Adele Caldarella Colorectal cancer incidence: an increasing trend under 50 years of age?
Victoria Cairnduff Dying with cancer: perspectives of bereaved friends and relatives
Conor McKenna Presentation, referral and management of oral cavity cancer in Northern Ireland–2013
María José Sánchez Geographical variation and modulation factors of lung cancer survival in Southern Spain
Conan Donnelly A population level investigation of cancer clinical trials participation in a UK region
Marcela Guevara Trends in patterns of care for breast cancer patients in Navarre, Spain. A population-based high resolution study
Alice Billot-Grasset Improving survival of patients with hepatocellular carcinoma between 2005 and 2012 in the Finistere area, France
Alice Billot-Grasset Impact of the decline in colorectal cancer participation screening
Victoria Cairnduff Investigating the characteristics of breast cancer patients assigned to self-directed aftercare programme
Riccardo Capocaccia The analysis of hospitals of referral and treatment in rare cancer patients
Alain Monnereau Survival of hematological malignancies in France between 1989 and 2013: a population-based study from FRANCIM network
Kayo Nakata Trends in survival of childhood cancer in Osaka, Japan, 1975-2009
Theme: Cancer registry data: quality, methods and tools
Walter Mazzucco Thyroid cancer risk in the Palermo province: a spatial analysis
Pilar Gutiérrez Step by step towards the implementation and quality of the Castile and Leon population-based Cancer Registry (CLPBCR)
Luminita Blaga Software tool for increasing cancer data quality within Northwestern Regional Cancer Registry from Romania
Matthias Lorez Evaluation of completeness of case ascertainment in Swiss cancer registration
Tiina Hakanen The Finnish Cancer Registry description
Michael Rosskamp Optimisation of malignant mesothelioma registration at the Belgian cancer registry
Ron Pritzkuleit The small-area cancer atlas Schleswig-Holstein, Germany
Geert Silversmit Cancer specific Potential Years of Life Lost (PYLL(75)) in Belgium
Paolo Contiero Estimating cancer incidence from drug prescriptions, outpatient data, and hospital discharges
Anna Maria Nannavecchia Cancer incidence estimation method: an Apulian experience
Theme: Integrating cancer registry data and clinical practice
Alexandra Mayer ROR-Sul Platform: an innovative tool for cancer research and clinical practice
Verena Pfeiffer 40 Years of collaboration between the Swiss Childhood Cancer Registry (SCCR) and Swiss Paediatric Oncology Group (SPOG)
Charlene M. McShane Establishing a population-based register of monoclonal gammopathy of undetermined significance in Northern Ireland
Ettore Bidoli Cancer risk among patients with type 2 diabetes mellitus: a population-based cohort study in Northeastern Italy
Marta Solans Net survival of Hodgkin lymphoma by stage and histological subtype in Girona (Spain): a population-based study 1985-2013
Eileen Morgan Physical after-effects reported by men undergoing prostate biopsy. Results from an all-Ireland study
Best Poster Awards
Award Authors Title
1 Ina Schönfeld, Klaus Kraywinkel, Monika Hackl, Henrike Karim-Kos, Matthias Lorez, Volker Arndt Comparison of thyroid cancer incidence rates in Austria, Switzerland and Germany.
2 Eileen Morgan, Frances J. Drummond, Catherine Coyle, Anna Gavin, Linda Sharp Physical after-effects reported by men undergoing prostate biopsy. Results from an all-Ireland study.
3 Ron Pritzkuleit, Nora Eisemann, Alexander Katalinic The small-area cancer atlas Schleswig-Holstein, Germany.