A disease registry is a computer application ‘‘used to capture, manage, and provide information on specific conditions to support the organised care management of patients with chronic disease."

What is at stake?

Cancer is still the second biggest cause of death in Europe: in 2008, 2.5 million people were diagnosed with cancer in the European Union (EU27). [1] Several EU and national cancer databases already exist and research activities are ongoing in Europe, but so far there is very little coordination among them, resulting in a fragmentation of work and in cancer data. As a result, the European Commission has suggested creating a European cancer information system in the Communication on Action Against Cancer: European Partnership.

- agenda of the event

Speakers attending the workshop were representing European Network of Cancer Registries (ENCR), Joint Research Centre (JRC), Association of Nordic Cancer Registries (ANCR), European Cancer Patient Coalition (ECPC), International Association of Cancer Registries (IACR) andthe European Partnership for Action Against Cancer (EPAAC).

Find out more on the work of the European Partnership for Action Against Cancer (EPAAC)

Lessons learned from the event - Overview of Cancer Information systems in Europe

A future cancer information System in Europe should provide good quality data for cancer policy and make possible the monitoring and evaluation of individual cancer cases. Collected data could also be used for future cancer-related research.

Where can cancer registries be used?

  • epidemiological surveillance,
  • testing,
  • evaluation of the impact of preventive interventions on populations,
  • evaluation of cancer care,
  • economic evaluation and
  • planning of cancer care policies

Registries are useful in at least five different ways:

  1. to provide physicians with ‘‘exception reports’’ that identify patients who are not receiving care according to practice guidelines or who remain out of therapeutic range;
  2. to create point-of-care clinician reminders that summarise a patient’s care management tasks and identify which tasks are due;
  3. to generate reminder notices to be sent to patients when care management tasks are due; and
  4. to create ‘‘high risk lists’’ showing which patients require more intensive management.

The Joint Research Center (JRC) hosts the secretariat of the European Network of Cancer Registries (ENCR) which encourages collaboration between stakeholders and research institutes. The ENCR data is collected and maintained in the European Cancer Observatory (ECO). In addition, ENCR launched a Working group with stakeholders and research groups, to work together to establish a common set of quality criteria for cancer registry data in Europe.

Are Cancer registries relevant for other chronic diseases for example Chronic Obstructive Pulmonary Disease (COPD)?

EPHA took part in the debate and made the following points:

Scientific evidence demonstrates the efficiency of cancer registries. The quantitative problem linked to cancer registries had been raised during the debate since there are several fragmented registries at a national level. However, at a qualitative level, cancer registries might be used for other chronic diseases.

Taking the example of COPD there are at least 4 common linking factors between cancer and COPD:

  1. Both COPD and certain types of cancer are chronic diseases
  2. Both COPD and cancer require costly healthcare
  3. Both COPD and cancer have common co-morbidities and epidemiology. As an example, smoking is the cause of some cancer types and is at the same time the main risk factor of COPD.
  4. They both have a time bomb effect , which means that for most common cancers, in the early stage there are no tangible symptoms and fatalities happen after a long period of time when treatment is more difficult.

While fully respecting data protection principles, it would be worth examining the potential of using or extending existing registries, such as the cancer registries, for other chronic diseases, such as COPD, instead of having to set up a costly new database.

What were the speakers opinions on this issue?

Dr Hans STORM, Association of Nordic Cancer Registries (ANCR) said that the option will depend on the country, but most importantly the same software and the same processes could be used, providing that a specialist could set up the relevant variables. Including data on other chronic diseases can increase the volume of data and special attention should be made to ensure this does not happen.

Dr Stefano ROSSO, Chairman, ENCR (European Network of Cancer Registries) explained that cancer registrations started early and most of the standards developed can be replicated for other pathologies. The management of cancer registries varies among countries, different organisations (universities, public institutes) are in charge of cancer registries, yet standards are the same everywhere.

- Further details on Disease registries: Julie Schmittdiel et al. (2005) BRIEF REPORT: The Prevalence and Use of Chronic Disease Registries in Physician Organizations A National Survey

- Proceedings of the event(pdf)

EPHA related articles


[1] Source for all cancer incidence estimates for 2008: Ferlay J, Shin HR, Bray F, Forman D, Mathers C and Parkin DM. GLOBOCAN 2008, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 10 [Internet]. Lyon, France: International Agency for Research on Cancer; 2010. Available from: http://globocan.iarc.fr

Last modified on May 7 2014.