The development of a new information model for a pediatric cancer registry on late treatment sequelae in the Netherlands

M. W.M. Jaspers, H. Caron, H. Behrendt, C. Van Den Bos, P. Bakker, F. Van Leeuwen

Research output: Chapter in Book/Report/Conference proceedingConference contributionAcademicpeer-review

12 Citations (Scopus)

Abstract

Worldwide, the need is felt for life time follow up of survivors of childhood cancer and for the establishment of registries of the late effects of pediatric oncology treatments. There is however little consensus about how this all should take place. For example, agreement on the nature of this follow up and the type of data to be collected in view of the earlier diagnosis and treatment of the patient is lacking. In a close collaboration between the 'Late Effects Study Group' (consisting of the Pediatric Oncology department of the Emma Children's Hospital and the department of Medical Oncology at the Academic Medical Center), the Netherlands Cancer institute/Antoni van Leeuwenhoek Hospital, and the department of Medical Informatics of the University of Amsterdam, consensus was reached on a new dataset on adverse late effects of pediatric oncology treatment. This dataset was used in developing an information model for the design of a computerized documentation system, PLEKsys. PLEKsys covers both standardized documentation of all relevant data items for evaluating late effects and review facilities on individual patient basis and on patient cohorts. We will install PLEKsys at all Dutch pediatric oncology centers and use the information model as a starting point in developing a National Pediatric Oncology Follow up Registry. A national programme encompassing all Dutch pediatric oncology centers has already been set up to co-ordinate the construction of this national registry.

Original languageEnglish
Title of host publicationMedical Infobahn for Europe - Proceedings of MIE 2000 and GMDS 2000
PublisherIOS Press
Pages895-899
Number of pages5
ISBN (Print)1586030639, 9781586030636
DOIs
Publication statusPublished - 2000
Event16th Medical Informatics Europe Congress, MIE 2000 and 45th Annual Congress on German Association for Medical Informatics, Biometry, andEpidemiology, GMDS 2000 - Hannover, Germany
Duration: 27 Aug 20001 Sept 2000

Publication series

NameStudies in Health Technology and Informatics
Volume77

Conference

Conference16th Medical Informatics Europe Congress, MIE 2000 and 45th Annual Congress on German Association for Medical Informatics, Biometry, andEpidemiology, GMDS 2000
Country/TerritoryGermany
CityHannover
Period27/08/20001/09/2000

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