EUROCOURSE lessons learned from and for population-based cancer registries in Europe and their programme owners: Improving performance by research programming for public health and clinical evaluation

Urinary tract cancer survival in Europe 1999–2007: Results of the population-based study EUROCARE-5

“…Population-based RS was estimated on all cancer patients, not only those diagnosed at early stage or those eligible for clinical trials, thus it gives an overall measure of the effectiveness of health care systems in cancer prevention, early diagnosis and treatment [29][30][31].…”

EUROCOURSE recipe for cancer surveillance by visible population-based cancer RegisTrees® in Europe: From roots to fruits

“…This is usually a chaotic process which therefore needs programmatic structuring, and also attention for training. Each of the five major research domains has its own dynamics, study questions and methodologies (Table 2) [11]. Depending on regulation of data protection [12], linkages can be made or developed with other databases on environmental, occupational and medico- Fig.…”

“…The RegisTree grows in its regional clinical and public health environment, both the soil -receiving falling fruits and leaves -and air quality, but produces on a global scale. Of course, trees can also rot or be felled by wind or a saw and usually benefit from trimming [11]. It is also obvious that rain and sunshine are, for a RegisTree, like attention and guidance, while safeguarding its independent role by the PO; this is also influenced by stakeholders as information users and data providers.…”

“…In the bigger member states (MSs) (P15 million) coverage varied from 15% to 25% in Poland, Romania, France [7] and Spain [8] to about 50% in Italy [9] and Germany [10] and 100% in the Netherlands and the United Kingdom (UK). Studying best CR practices showed a higher and broader intensity of use of CR data to be based on verifiable input and good linkages as well as on a research department with broad external contacts with the various stakeholders in oncology and public health, active in about five clinical oncology and public health research domains (www.eurocourse.org -deliverables -D1.1) [11]. The attraction of such a research department, sometimes called the 'front office', if properly staffed by senior epidemiologists or biostatisticians, is to offer dedicated MSc or PhD students 4 , PhDs and young MDs well-supervised opportunities for analysing and publishing the abundance of 'big' data facilitated by successful grant applications [11].…”

“…This diminishes relevance and can be perceived as invisibility [21]. Clinical policymakers often did not seem to appreciate the value of population-based studies: [11] e.g. of over-or undertreatment of patients with serious co-morbidity or of great age.…”