2014 - Towards a harmonized cancer information system in Europe

Published: 12 November 2014

The ENCR and the JRC organised the 2014 ENCR Scientific Meeting and General Assembly. The purpose of this 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. The meeting targeted staff belonging to ENCR-affiliated cancer registries including registrars, researchers, epidemiologists, and clinicians. Participants also included representatives from the European Commission, various European institutions, research projects, cancer associations and invited speakers. The 2014 ENCR Scientific Meeting and General Assembly involved more than 160 participants from 33 countries, with 26 oral presentations, 5 invited lectures, and almost 70 poster presentations.

Please find on this page all the documents collected during the 2014 ENCR Scientific Meeting and General Assembly:


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

Detailed Programme

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

Oral Presentations

Opening Ceremony
Moderators: Stefano Rosso, Krzysztof Maruszewski, Ciarán Nicholl
14:15-14:30 The Joint Research Centre Krzysztof
14:30-14:45 Introduction to the JRC and its public health activities Ciarán
Plenary Session on results from ENCR Working Group on data quality checks
Moderators: Emanuele Crocetti and Lydia Voti
14:45-15:00 Introduction, methods and general results Emanuele
15:00-15:25 One common procedure for European cancer registries Carmen
15:25-15:40 Software and tools Stefano
1st Scientific Session - Cancer burden in Europe: incidence, mortality, survival and prevalence
Moderators: Alexander Katalinic and Giorgia Randi
16:30-16:50 Invited Lecture - The burden of Cancer: where Europe stands in the world Eva
16:50-17:00 Recent breast cancer incidence and mortality trends by age: a collaborative study of 13 registries Nadya
17:00-17:10 Mixture cure models applied to cancer sites diagnosed
in the Flemish region of Belgium
17:10-17:20 Cause-specific late mortality among survivors of childhood cancer in Switzerland: a population-based study Matthias
17:20-17:30 Regional variation in incidence for smoking and alcohol related cancers in Belgium Kris
17:30-17:40 Childhood cancer mortality in Belarus: temporal trends
and recommendations for improvement of the results
2nd Scientific Session: Availability, completeness and reliability of information collected by registries
Moderators: Hans Storm, María Dolores Chirlaque and Carmen Martos
09:30-09:50 Invited Lecture - The contribution of Cancer Registries to Cancer Control Roberto
09:50-10:00 Completeness estimation of Austrian cancer incidence data Monika
10:00-10:10 Implications from under-reporting, death certificate notifications and trace-back on incidence estimates of a newly established cancer registry Bernd
10:10-10:20 Estimating life expectancy of cancer patients Riccardo
10:20-10:30 Effect of active follow-up on survival estimates in a sample of cancer registry cases Chris
10:30-10:40 Childhood CNS tumour survival in Europe: a problem of comparison between countries Laura
3rd Scientific Session: Statistical methods and software tools for cancer registries
Moderators: Stefano Rosso, Anna Gavin and Giorgia Randi
11:30-11:50 Invited Lecture: Morbidity statistics on cancer: the way ahead to the European Statistical System Hartmut
11:50-12:00 Maps on cancer risk and related issues in the Nordic countries: a tool for attractive illustration Eero
12:00-12:10 A log-rank type test to compare net survival distributions Roch
12:10-12:20 Diagnostic tools for model building in net survival:
test of the proportional hazards assumptions
12:20-12:30 Bayesian approaches to predict the cancer burden in areas with or without cancer registration data Ramon
12:30-12:40 Avoiding pitfalls in net survival estimation Maja
Pohar Perme
4th Scientific Session: Cancer Registries and their impact on health policies
Moderators: Harry Comber, Carlotta Buzzoni and Lydia Voti
14:00-14:20 Invited Lecture: The confidentiality conundrum in Europe: between opposition and inaction Hans
14:20-14:30 Prostate cancer treatment decision making: results from all-Ireland picture (prostate cancer treatment, your decision) study Frances J.
14:30-14:40 Evaluating the impact of new diagnostic criteria of chronic lymphocytic leukemia in population-based cancer registries Rafael
14:40-14:50 England’s national cancer registration service providing cancer information in a data driven world Sally
14:50-15:00 Use of registry data to estimate the impact of an asbestos-cement factory on mesothelioma incidence Dario
15:00-15:10 Viribus Unitis: the Italian network of cancer registries, a harmonised cancer information system Emanuele
ENCR General Assembly
Moderator: Stefano Rosso
16:00-16:15 Presentation of the new elected and nominated members
and the present composition of the ENCR SC
16:15-16:30 Report on the ENCR activities: the achievements, the issues and the future challenges Stefano
16:30-16:45 ENCR recommendations: recent activities and update plans Anna
16:45-17:00 Courses, site visits and support to the registries Alexander
17:00-17:15 Results of the 2014 membership survey Lydia
17:15-17:30 Membership and voting rights Hans
5th Scientific Session: Clinical data–how and when: integration and use of clinical datasets by population-based registries
Moderators: Andrea Bordoni, Nadya Dimitrova and Tadek Dyba
09:30-09:50 Invited Lecture: Integration of clinical databases and registries: the German experience Alexander
09:50-10:00 Linking up the false and real-world evidence: on the path towards ‘evidence-based medicine’ Lifang
10:00-10:10 Not the type of surgical treatment but neoadjuvant treatment influences survival in gastro-esophageal junction tumours Rob
10:10-10:20 The order of radiotherapy and chemotherapy in early breast cancer and its effect on outcome Otto
10:20-10:30 Analysis and comparison of cancer treatment in the Fehmarn belt region using existing cancer registries Hans
10:30-10:40 Sarcomas: population based studies to measure quality indicators for centers of expertise Annalisa Trama
10:40-10:50 Oropharyngeal cancers in Flanders: clinical management and survival Harlinde
De Schutter

Poster Presentations and Best Poster Awards

Theme - Cancer burden in Europe: incidence, mortality, survival and prevalence

First author Title
Monika Hackl Prediction of cancer incidence and cancer mortality in Austria up to the year 2030
Anita Feller Trends in oesophageal and gastric cancer incidence according to histology and anatomical location in Switzerland, 1982-2011
David Gigineishvili Incidence rates of primary brain tumours in Georgia–results from a first large population-based study
David Jegou Cancer prevalence in Belgium, 2010
Sarah Miller Young cancer survivors: UK cancer prevalence in children, teenagers and young adults
Claudia Oehler Variation in cancer incidence (1996-2010) and mortality (1997-2011) by deprivation quintile, in England
Maria Luisa Vicente-Raneda The neuroblastic tumour in Comunitat Valenciana (Spain)
Grazia Antonella Cannone Cancer incidence in children, Puglia, years 2003-2008
Lucy Irvine Understanding the burden and characteristics of older people living with cancer in the UK
Mieke Van Hemelrijck Incidence of second malignancies for prostate cancer in the Canton of Zurich, 1980-2010
Gerda Engholm NORDCAN: fruitful collaboration on cancer statistics between the Nordic Cancer Registries
Giedre Smailyte Cancer mortality differences by education and avoidable deaths in Lithuania: a register-based census-linked study
Matthias Schindler Survival from childhood cancer in Switzerland during 1979-2008: a population-based study
Maria Ramos Monserrat Survival by stage of colon cancer
Elena Molina Thyroid cancer in Granada (Spain): incidence trends by sex, age and histological type
Sean McPhail Cancer survival in England by stage, 2012
Hannah McConnell
(III Best Poster)
Understanding variations in outcomes for people diagnosed with cancer and implications for service provision
Uwe Bieri Changes in autopsy rates and findings among cancer patients from the public health point of view: a longitudinal study from 1980 to 2010 with data from Cancer Registry Zurich
Anton Ryzhov Comparative survival analysis of cancer patients in Ukraine, 2002-2007
Joanna Didkowska Cancer burden in Poland in 2011
Clara Castro Limited-duration and complete prevalence of colorectal cancer in the north of Portugal
Javier De la Cruz What is the share of rare cancers in the total rare diseases prevalence?
Pamela Minicozzi Remarkable survival improvement for European patients with haematological malignancies from 1997 to 2008

Theme - Availability, completeness and reliability of information collected
by registries

First author Title
Kaire Innos Age-specific effect of under-ascertainment of death certificate initiated cases on survival estimates in estonia
Maja Primic-Žakelj Linkage of the Slovenian Cancer Registry data to other State databases and to screening registries
Maarit Leinonen Finding the most feasible and efficient method to trace back of DCO cases
Nea Malila Validity of the Cancer Registry–comparison between hospital discharge data and the FCR
Matthias Lorez Using funnel plots to explore the quality of vital status follow-up in Switzerland
Anna Maria Nannavecchia Cancer registry of puglia (RTP): from collaborative network towards a data quality improvement
Eleni Petridou Developing nationwide childhood brain tumors registration in Greece: preliminary results and comparisons with southeastern-European registries
Benjamin Barnes Annual compilation of scientific use files at the German Centre for Cancer Registry Data
Matthias Schindler Death certificate notifications in the Swiss Childhood Cancer Registry: validation of registration procedures and completeness
Esther Molina-Montes Time trends in incidence of cancer of unknown primary site in Granada (Spain) 1985-2011
Giulio Napolitano Cancer staging with canstaging: facilitating international availability, standardisation and comparability of data
Katarina Tomic Assessment of data quality in the National Prostate Cancer Register of Sweden

Theme - Statistical methods and software tools for cancer registries

First author Title
Sandro Tognazzo Validation of a probabilistic classifier for the automatic registration of second primary cancer cases
Alessandro Borgini Analysis of lung cancer by histologic type in areas Open Registry
Consol Sabater Neos, a local software for managing cancer information in the Comunitat Valenciana
Enzo Coviello Investigating cancer survival geographical differences in Italy by using funnel plots
Celia Touraine An excess hazard model adjusting for lack of life table variables
Maurizio Zarcone Use of funnel plots and alternative approaches for ecological studies: the experience of Palermo province cancer registry
Isabelle Clerc-Urmès Flexible relative survival analysis in R
Isabelle Clerc-Urmès Estimating the net survival function in STATA
Ana Miranda The ROR-Sul new platform, an innovative tool for cancer research and practice development

Theme - Cancer registrations methods and use, and dissemination of results

First author Title
Carlotta Buzzoni Italian Cancer Registries data for insights in environmental contamination: the SENTIERI Project
Claudia Oehler Coding cancer of unknown primary: registration and reporting survey of the UK, Ireland and Australia
Patriciu Achimas-Cadariu Cervical Cancer Control for Roma and Other Disadvantaged Groups in North-Western Region of Romania
Monserrat Puig-Vives Changes in invasive breast cancer survival in Girona, 2000-2009
Klaus Kraywinkel ICD-O-3 to ICD-10 conversion for hemato-oncological diseases following recent updates in both classifications
Miroslav Zvolský New system of eletronic data collection for the Czech National Cancer Registry
Kath Yates Public Health England–Big Data–New tools
Volker Arndt Different strategies to recruit long-term cancer survivors via population-based cancer registries in Germany: response and representiveness
Urszula Wojciechowska Electronic data collection: new tool for data registration in Poland
Rafael Marcos-Gragera Population-based distribution of bladder cancers in Girona and Tarragona according to the WHO classification
Joana Bastos Interval breast cancers in a mammography screening programme: the importance of collaboration between institutions

Theme - Clinical data: how and when. Integration and use of clinical datasets
by population-based registries

First author Title
Sam Johnson Routes to diagnosis: does it matter when or how a cancer is diagnosed?
Marijn Koëter Esophageal cancer: influence of region and type of hospital on probability to receive curative treatment
Tiziana Cassetti Specialized Pancreatic Tumours Registry, Multidisciplinary Team and Blog of Pancreas: the added value for patients
James Shield Patients diagnosed with metastatic breast, lung and prostate cancers on presentation
Zdravka Vassileva-Valerianova Exploration of metastases in newly diagnosed cases of cutaneous malignant melanoma in 2006-2007 in Bulgaria
Sarah Miller
(II Best Poster)
Hospital outpatient attendances linked to cancer registrations in England: analysis of 4-year peri-diagnostic period
Annelotte van Bommel
(I Best Poster)
Variation and causes of variation in immediate reconstruction after ablative surgery for invasive breast cancer
Jan Maarten van der Zwan Information network on rare cancers (RARECAREnet)
Francesco Cuccaro Incidence of skin melanoma in Puglia: a comparison with the rest of Italy
Jon Shelton Linking cancer registrations with hospital data to determine the route to diagnosis
Finian Bannon Surveillance of non-melanoma skin cancer incidence rates in kidney transplant recipients in Ireland
Luciana Neamtiu The European Commission’s Initiative on Breast Cancer: a challenge for standardisation of breast cancer data collection