89IN - Cancer registries in support of planning and assessing population based oncology outcomes

Date 01 October 2012
Event ESMO Congress 2012
Session Evidence-based answers to critical questions on cancer screening and prevention
Topics Aetiology, epidemiology, screening and prevention
Basic Scientific Principles
Presenter Jan Willem Coebergh
Authors J.W. Coebergh
  • Department Of Public Health, Comprehensive Cancer Centre South, 5612 RT - Eindhoven/NL


The about 200 population-based cancer registries in Europe are currently in an upswing thanks to an ERA-net FP7 project named EUROCOURSE www.eurocourse.org that aims to strengthen their infrastructure in order to better serve the clinical oncology and public health communities and policymakers to solidify & improve prevention (primary and through mass screening), cure (including quality of care) and care (both survivorship and palliative) in various ways: - clarifying widely diverging governance and budgets, despite uniform operational methodology and training needs of both data collectors and data analysts, which warrants valid, neutral, safe and integer data gathering and timely information ‘production’ on all aspects of incidence and prognosis of the cancers ‘that be’ both through on-line and peer-reviewed reporting and with a new European dataportal at IARC - promoting enrichment by linkages with other data sources, e.g. vital statistics and research, e.g. EPIC-study, and occupational, screening and clinical cohorts, with due attention to, traditionally very well kept, data protection (alas hampered by unwarranted obstacles in certain memberstates (a sequel from an unfortunate dictatorial past + incorrect interpretation of EU directive 95/46). - allowing registries to be sampling frame for in-depth studies of quality of care (adherence to guidelines/best practice?) both process and outcome carried out with more speed/urgency than usual because also needed in areas/parts of Europe without registry coverage, i.e. in or within more than 50% of the EU, especially in larger memberstates) not only of first line treatments due to increasing application of targeted drugs and survivorship in the various phases of the disease - allowing depth via strategic collaborations with clinical, etiological, screening databases (stakeholders), promoting the cost-effectiveness of a rich infrastructure serving many users (Nordic ‘model’) versus the current threat of fragmentation by tumourspecific clinical databases (at risk for becoming data cemetaries) With the tree as metaphor a landscape of registries is shown, remaining close to its clinical roots. Major European references Comment: Lancet Oncology 2005;6:193-5 Trends: Eur J Cancer 2008;44:1345-89 Recent data: Eur J Cancer 2010;46:765-81.


The author has declared no conflicts of interest.