gms | German Medical Science

Kongress Medizin und Gesellschaft 2007

17. bis 21.09.2007, Augsburg

Database for studies on long-term survivors after childhood cancer and quality of the long-term surveillance

Meeting Abstract

Suche in Medline nach

  • Desiree Debling - German Childhood Cancer Registry (GCCR) at the Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University of Mainz, Mainz
  • Claudia Spix - German Childhood Cancer Registry (GCCR) at the Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University of Mainz, Mainz
  • Maria Blettner - Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University of Mainz, Mainz
  • Peter Kaatsch - German Childhood Cancer Registry (GCCR) at the Institute for Medical Biostatistics, Epidemiology and Informatics (IMBEI), University of Mainz, Mainz

Kongress Medizin und Gesellschaft 2007. Augsburg, 17.-21.09.2007. Düsseldorf: German Medical Science GMS Publishing House; 2007. Doc07gmds495

Die elektronische Version dieses Artikels ist vollständig und ist verfügbar unter: http://www.egms.de/de/meetings/gmds2007/07gmds495.shtml

Veröffentlicht: 6. September 2007

© 2007 Debling et al.
Dieser Artikel ist ein Open Access-Artikel und steht unter den Creative Commons Lizenzbedingungen (http://creativecommons.org/licenses/by-nc-nd/3.0/deed.de). Er darf vervielfältigt, verbreitet und öffentlich zugänglich gemacht werden, vorausgesetzt dass Autor und Quelle genannt werden.


Gliederung

Text

Objective: The German Childhood Cancer Registry (GCCR) can be seen as a cohort of almost all former childhood cancer cases. It is followed for mortality, late effects, secondary malignant neoplasms, and quality of life [1], [2], [3]. The aim of this analysis is to assess the completeness and quality of the follow-up data comparing former patients with up-to-date follow-up information (update within the last 5 years) to former patients with less up-to-date follow-up information.

Method: Since 1980 the GCCR systematically collects all malignant cancers below the age of 15 years at diagnosis [1]. Participants are followed up actively, by the treating hospitals and the clinical studies in the first years after diagnosis, and by the GCCR in the later long-term surveillance. This is supported by a recent position paper of the scientific Society for Paediatric Oncology and Haematology (GPOH) [4].

Results: Out of the more than 28,000 children, who were diagnosed with cancer from 1980-1999, approximately 7,500 died, and more than 18,000 can be followed up further (i.e. name and address are known and patients are not lost to follow-up); these are more than 64% of all ever registered patients.

From more than 70% of the patients in this follow-up cohort, we have up-to-date information from the last 5 years. The active follow-up is most successful for patients with leukemias, lymphomas, and sympathetic nervous system tumours. The quality of follow-up depends primarily on diagnosis. The characteristics of the follow-up cohort and strategies for further improvement of follow-up shall be presented.

Conclusion: We expect this cohort to be representative for the long-term surveillance of former childhood cancer patients in Germany in the long run.

Acknowledgements: The study is supported by the German Children's Cancer Foundation and the Ministry of Education and Research in the framework of the Competence Network Paediatric Oncology and Haematology.


References

1.
Kaatsch P. Das Deutsche Kinderkrebsregister im Umfeld günstiger Rahmenbedingungen. Bundesgesundheitsbl Gesundheitsforsch Gesundheitsschutz. 2004;47:437-43.
2.
Kaatsch P, Blettner M, Spix C, Jürgens H. Das Langzeit-Follow-up in der deutschen pädiatrischen Onkologie als Basis für die Durchführung von Studien mit Langzeitüberlebenden. Klin Pädiatr. 2005;217(3):169-75.
3.
Debling D, Blettner M, Brömmel M, Kerenyi I, Kaatsch P. Welche Langzeitfolgen hat Krebs im Kindesalter? - Studien sollen Auskunft geben. WIR. 2007;1:24-5.
4.
Positionspapier der GPOH zu (Langzeit-) Nachbeobachtung, (Langzeit) Nachsorge und Spätfolgenerhebung bei pädiatrisch-onkologischen Erkrankungen. http://www.kinderkrebsinfo.de/e2260/e13266/e13270/PositionspapierderGPOH_2006-6-08_ger.pdf. Stand 8.3.2007. Externer Link