Paediatrics - Late effects

 

The registration project "Paediatrics - Late effects" (PLE) is an initiative of the Dutch-speaking paediatric haemato-oncology centres and is supported by the French-speaking centres. The project enjoys financial support of Kom op tegen Kanker and is set up by the Belgian Cancer Registry and the Belgian Society of Paediatric Haematology Oncology (BSPHO).

 

The PLE project has as main objective to collect and explore the acute and late side effects associated with the treatment of cancer in children and adolescents. With this information we aim to gain more insight into the late effects, identify unknown side effects and develop evidence-based guidelines to prevent late effects of cancer treatments in children and adolescents.

 

The project is available online to treating physicians and their registration staff since September 2017 and includes cancer patient registrations from 0 until and including 19 years at the time of diagnosis. Registration takes place via the Web Based Cancer Registration (WBCR) application of the Belgian Cancer Registry (module Paediatrics - Late Effects). More information about the usage of this application is available in the PLE WBCR Manual.

 

 

The project module contains both a primary (at the time of diagnosis) and a follow-up registration form. The primary registration form should be filled out for every first and subsequent new primary tumour, at the end of the first-line treatment. The variables to be registered consist of: administrative patient data, diagnostic data of the primary tumour, medical history, treatment, lifestyle and acute effects of the cancer (treatment).

 

The follow-up registration form should be filled out in the 5 following situations:

  1. Progression after stable disease, at the end of the treatment line.
  2. Progression without stable disease (e.g. start of a second-line treatment), at the end of the treatment line.
  3. Relapse, at the end of the first-line treatment.
  4. New subsequent primary tumour, at diagnosis (afterwards a primary registration form should be completed as well at the end of the first-line treatment).
  5. Regular 5-year follow-up, every 5 years after the diagnosis of the (first) primary tumour.

 

The variables to be registered consist of: administrative patient data, medical history, follow-up specifications, treatment, lifestyle and late and/or acute effects of the cancer (treatment).

 

The PLE registration module is only available in English and is only accessible for the physicians and registration staff of the paediatric haemato-oncology centres.

 

If you would like more information about the Paediatrics - Late effects project, please contact us via PaedLateEffects@kankerregister.org or via 02/250 10 10.