Abstract
Currently about 160 population-based cancer registries (CRs) in Europe have extensive
experience in generating valid information on variation in cancer risk and survival
with time and place. Most CRs cover all cancers, but some are confined to specific
cancers or to children. They cover 15–55% of the populations in all of the larger
member states of the European Union (EU), except the United Kingdom (UK), and 100%
coverage in 80% of those with populations below 20 million. The EU FP 7 EUROCOURSE project, which operated in 2009–2013, explored the
essential role of CRs in cancer research and public health, and also focused attention
on their programme owners (POs) and stakeholders (e.g. cancer societies, oncological
professionals, cancer patient groups, and planners, providers and evaluators of cancer
care and mass screening). Generally, all CRs depended on their regional and/or national
oncological context and were increasingly involved in population-based studies of
quality of cancer care, long-term prognosis and quality of life, one third being very
active. Within the public health domain, CRs, in addition to describing the variety
of environmental and lifestyle-related cancer epidemics, have also contributed actively
to aetiologic research by a European databases that showed wide discrepancies in cancer
risk and survival across the EU, and in more depth by follow-up of cohorts and recruitment
for case-control studies. CRs were also actively contributing to independent evaluation
of mass screening as an intervention which affects quality of care and cancer mortality.
The potential of CRs for clinical evaluation has grown substantially through interaction
with clinical stakeholders and more incidentally biobanks, also with greater involvement
of patient groups – with a special focus on elderly patients who generally do not
take part in clinical trials. Whereas 25–35% of CRs are active in a range of cancer
research areas, the rest have a low profile and usually provide only incidence and
survival data. If they are unable to do so because POs and stakeholders do not demand
it, they might also be inhibited by data protection restrictions, especially in German
and French speaking countries. The value of population-based studies of quality of
oncologic care and mass screening and the flawless reputation with regard to data
protection of intensively used CRs in the northwest of Europe offered a sharp contrast,
although they also follow the 1995 EU guideline on data protection. CRs thus offer
a perfect example of what can be done with sensitive and minimal data, also when enriched
by linkages to other databases. Intensive use of the data has allowed CR research
departments to take on a visible expertise-based profile but a neutral in many public
controversies in preventive oncology. Their management and fundability also appeared
to benefit from externally classifying the wide array of tumour- or tract-specific
intelligence and research activities for the various users in oncology and public
health and also patients – who are the source of the data – are better informed. Transparency
on what CRs enable may also improve through programmes of research have been deemed
essential to our funding POs (ministries, cancer charities, cancer centres or public
health institutes) who might benefit from some guidance to – often suboptimal –governance.
Therefore, a metaphoric RegisTree® has been developed for self-assessment and to clarify
CR working methods and domain-specific performance to stakeholders and funding agencies,
showing much room for development in many CRs. All in all, CRs are likely to remain
unique sources of independent expert information on the burden of cancer, indispensable
for cancer surveillance, with increased attention to cancer survivors, up to 4% of
the population. Investments in the expanding CR network across Europe offer an excellent
way forward for comparative future cancer surveillance with so many epidemiologic
and clinical changes ahead.
Keywords
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Article info
Publication history
Published online: April 30, 2015
Accepted:
February 6,
2015
Received in revised form:
February 5,
2015
Received:
January 13,
2015
Identification
Copyright
© 2015 Elsevier Ltd. Published by Elsevier Inc. All rights reserved.
