TransplantChild Key Activities
During 2023, 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
Continuous ERN Monitoring
The European Commission has set up a Continuous Monititoring System for the European Reference Networks. This exercise is an obligation for the ERN membership (Full Members and Affiliated Partners). Each healthcare provider (HCP) member of ERN TransplantChild has the responsibility to provide information on the number of patients with rare diseases that it is treating, as well as other activities undertaken to support the network (e.g. CPMS, publication and education/training activities). Once per year, the ERN TransplantChild coordination is responsible for collecting the data and to submit it to the EC.
The next data collection will be due in February 2024. Therefore, we will contact all member HCPs in January 2024 to start providing the required dating for the year 2023.
The EU created a new virtual platform. To date, two indicators (new patients and use of orphacodes) must be submitted there. Please check here how to get access to this tool.
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
One of the objectives of TransplantChild is to bring together healthcare professionals from different centres to share and generate knowledge, as well as promote research in the field of paediatric transplantation. Find below the work performed by our experts
Exchange Programme
Do not miss the opportunity to participate in the ERN Exchange Programme. Collaborate with healthcare professionals from other centers within the ERN and share your knowledge and insights.
Stakeholders’ contributions
In this section, partners and collaborators of the ERN can share their knowledge, experience and personal views regarding certain aspects of paediatric transplantation.
