Article written by Gerlind Bode, Advisor to the Board – from Peter Kaatsch’s presentation on Germany Registries at the 2008 Conference in Berlin.
A well-functioning registry is the backbone of any treatment program in paediatric oncology. Exact statistics about the outcome of treatment are the only way to evaluate and adapt therapy protocols. In many countries such registries have existed since the beginning of cooperative trials. In others, this kind of data collection is still at the planning stage.
In some countries, cancer registries are not legally mandatory but work on a voluntary basis. But parents and patients seem to be happy to give their consent if they understand the implications and value of such data.
The parent group “Care for Cancer Kids Foundation” in Indonesia tries to overcome the lack of a national childhood cancer registry by supporting the paediatric cancer ward financially and with manpower. Data collection in the hospital is backed by the personal involvement of members and volunteers who help to locate patients who don’t return to the clinic for their follow-ups.
The Swedish Childhood Cancer Registry, a research unit at the Karolinska Institute of Stockholm, provides exact epidemiological data on incidence and survival rates and integrates data from all Scandinavian States in the Nordic Registry.
The German Childhood Cancer registry was established in 1980 and is population based, so trends and cluster developments can be monitored. It works closely with all German co-operative study groups and hospitals treating children with cancer. Most European registries work closely with ACCIS (Automated Childhood Cancer Information System), a project supported by the European Commission to collect, present, interpret and disseminate data on childhood cancer in Europe. The ACCIS database contains some 160,000 records on childhood and adolescent cancer cases registered over the last 30 years in 78 European population-based cancer registries, covering 2.6 billion person-years. A number of helpful publications can be obtained from ACCIS or the IACRE (International Association of Cancer Registries) as well as practical support in setting up a childhood cancer registry.