TransplantChild Key Activities

During 2020, the following activities will be carried out in TransplantChild frame

Virtual Consultation

ERNs’ virtual consultations are carried out through the CPMS system these advisory boards follow a series of steps. Experts across Europe are invited to collaborate giving advice in consultation panels in the diagnosis or treatment of low prevalence and complex conditions.

Clinical Practice Guidelines

The development of Clinical Practice Guidelines (CPGs) is one of the key objectives of ERN TransplantChild, since it is one of the basis to improve healthcare in paediatric transplantation.

 

ERN Registry

Paediatric Transplantation European Registry (PETER) is a new rational, efficient, interoperable, open, accessible paediatric transplant registry for all type of paediatric transplantation. PETER will allow generating real world evidence monitoring by the identification of common outcomes for all types of transplant. This registry can be used as a model to support care and research for the benefit of patients, improvement of the transplanted patient healthcare, their life expectancy and long-term QoL of children and their families.

Training Activities

During 2020, the following activities will be carried out in TransplantChild frame

TransplantChild Workshop on translational research

Novel strategies in paediatric transplantation

E-learning training activities

The format will be an online course divided in several modules according to key topics identified.

2nd online course on continuous training in paediatric transplantation:

Through this online course we share updated information on the most relevant topics throughout the transplant process. Relevant professionals in the field, allow us an update that allows us to share and generate best practices in patient care.

Secondment programme

In order to promote the exchange of knowledge among the members of TransplantChild, interested professionals carry out short stays, where they receive training in key areas of the transplant.

Training activities for patients and their families

TransplantChild will promote activities that improve the knowledge of patients and their families about the transplant process in children.

Educational material for patients and their families

A guide on key aspect of the post-transplant phase for patients and families.

TransplantChild Webinars

The webinars are prepared by members of the network and made available for the full members and affiliated partners and other professionals involved in the paediatric transplantation process.

ERN Monitoring

The ERNs’ legal framework sets out the objectives, principles and criteria of the ERNs and defines the general implementation process including the assessment, approval and evaluation of the ERNs. Once positively assessed and approved, the ERNs are expected to perform and fulfil their goals and criteria and to be evaluated at least every five years.

Research

TransplantChild is member of the European Joint Programme on Rare Diseases (EJP RD), which brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

  • H2020 – MSCA – RISE 2018
  • Cost Action 2019
  • H2020-Twinning WIDESPREAD – 2018
  • MSCA – ITN 2019

Knowledge generation

Find out more about TransplantChild through interviews with our professional network members

Dr Piotr Kalicinski

Childrens Memorial Health Institute

Dr Lars Wennberg

Karolinska University Hospital

Dr Caroline Lindemans

UMC Utrecht