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Mapping of activity and expertise to support work in the field of rare diseases: the case of Transplantchild

date:  03/07/2019

Paediatric transplantation (PT) has dramatically improved the life expectancy of many children by providing life-saving treatment for organ failure. Compared to transplantation in adults, the lack of solid data related to PT remains problematic. The aim of this collaborative effort is to define the map of paediatric solid organ transplantation and hematopoietic stem cell transplantation activity in the EU. The information collected on paediatric transplantation activity across Europe will make it possible to analyse the number and distribution of existing transplantation centres and programmes.

As agreed by the attending Authorities at the 14th Meeting of the Competent Authorities for Organ Donation and Transplantation, held in Brussels (27-28 of June 2018), ERN TransplantChild has made an effort to collect information on PT activity through an interactive map that shows where specialised centres throughout Europe are located. This information will help to improve data reliability and knowledge about PT programmes.

The first interactive report includes information on the activities that took place between 2012 and 2016, identifying on an interactive map the location of the centres with PT activity and information on the type of transplant that took place (including the activity of both solid organ transplants and hematopoietic stem cells transplants). It allows information to be displayed by centre and number of PT performed, and groups data by age, country and type of transplant.