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

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.