Background European Reference Network on Paeditric Transplantation ERN-TransplantChild aim to improve the healthcare in the transplanted children and that implies ensuring the access for all patients to the best knowledge and experience by promoting the visibility of information regarding European paediatric transplantation activity.
Objective The aim is to create a complete map of the activity in Europe as agreed by all the attending Competent Authorities on Organ Donation and Transplantation at the 14th Meeting of the Competent Authorities held in Brussels (27-28th of June 2018).
Methods ERN-TransplantChild focuses on paediatric both solid organ and hematopoietic stem cell transplantation and currently it involves 18 different healthcare providers from 11 different EU member states. The Healthcare working group comprising a multidisciplinary team decided to define the EU map of the paediatric transplantation activities in order to achieve the highest reliability of the data. These have been requested to the National Agencies for Organ Donation and Allocation, European Transplantation Scientific Societies and the local centre registries.
Results The map definition includes the following data:
•Paediatric 2012-2016 transplantation total per EU centres, including both members or non members of Transplantchild.
•Percentage of the total and different organ-type transplant activity in children performed with data allocation for each European center.
This information will enable us to define: 1) to identify the most active centres not yet members of the ERN; 2) to analyze the number and distribution of existing centres and transplantation programs in all Europe, 3) to identify the equity in access to transplantation for pediatric candidates across Europe, and 4) to extend the network to all EU member states and thus provide access to the network to all patients and their families across the EU.
Acknowledges: We wish to acknowledge the support of the Unit B4 of Medical Products: Quality, Safety and Innovation of the DG Health & Food Safety (SANTE) for their invitation to the 14th Meeting of the Competent Authorities on Organ Donation and Transplantation. Without their endorsement and the generous collaboration of the representatives of each of the European Competent Authorities on Organ Donation and Transplantation, this work would have not been possible.