Dear Colleagues,
The Paediatric Oncology Community has been invited and funded by Directorate General for Health and Consumers (DG Sanco) to create a European Paediatric Haemato-Oncological Reference Network (PO-ERN) based on pre-existing structures and knowledge: this will facilitate implementation of the Cross Boarder Health Care Directive for children and young people with cancer.
This is a plea to devote a few minutes of your valuable time to help identify sub-groups of young cancer patients in your area of special expertise whose diagnostic and/or treatment pathway includes skills and services in one or more area of surgery, radiotherapy, transplantation and other diagnostics or therapeutic interventions that may not be widely available in all centres or all EU member states. This may occur inside or outside a clinical trial. However,as this specialist information is almost always captured in clinical trial protocols, we propose to use this as the starting point to identify the pathways and therefore your CTG’s input is invaluable to us.
We anticipate that most CTG networks know the hubs of expertise in the respective countries that may provide special diagnostic and treatment interventions to patients at special risk either at diagnosis or at relapse within one country or even cross-border if indicated.
During this project, we will work with you to define the criteria for European Reference Network Sites to contribute to a European roadmap of identified and volunteering sites ready to either share their expertise via structured tumour boards and /or are ready to receive patient referred for a necessary limited time for special diagnostics and/or interventions.
With your help, it is aimed to develop PO - ERN tumour boards with well-defined rules in providing expert advice on diagnostics and treatment options. We hope this initiative will allow optimization of treatment pathways in the best interest of patients and families and will foster cross border collaborations.. This process will be a voluntary one for sites and is intended to be inclusive rather than exclusive.
As a first step, with your help by completing this survey, we aim to define particular specialised diagnostics and treatment interventions for each disease area where defined patient sub-groups may benefit from the facilitation of Cross Border Healthcare through the creation of a European Paediatric Haemato-Oncology Reference Network. It is our sincere intention that Member States will adopt CHBC advisory services within their respective health insurance compensation policy. This follows the idea to move the information and not the patient if not really needed. This shall allow patients and families to stay in their family and social environment.
Thank you very much for your help and support of this important common European effort.
The ExPo-r-Net Coordinator
Prof. Ruth Ladenstein
For reference please visit our WEB page: www.expornet.eu
To provide us with trial protocol or guidelines please use:
E-Mail address: expornet@ccri.at or our ExPO-r-Net Dropbox-link:
https://www.dropbox.com/sh/0heekd12ciuhaq6/AAD0UlfIs4TxKwfwk6h_6KwOa?dl=0
