European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe.
They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources. Currently, 24 thematic ERNs are active, involving over 900 medical teams in more than 300 hospitals from 25 EU countries, plus Norway.
TransplantChild: the ERN on paediatric transplantation
Coordinated by La Paz University Hospital. It encompasses both solid organ transplantation (SOT), included multiorgan and complex procedures, and hematopoietic stem cells transplantation (HSCT). The main goal is to have a significant impact on children’s quality of life in the long term. To achieve it, the methods implemented are: giving the patients network access to diagnostic advice and joining with members of the network and stakeholders to increase the information, innovate and expertise in the transplant procedures.
TransplantChild Executive Committee
Transplantchild Executive Committe
Dr. Paloma Jara Vega
Coordinator of ERN TransplantChild
Coordinator of the Networking & Knowledge Management WG
Dr. Antonio Javier Carcas Sansuán
Dr. Francisco Hernández Oliveros
Dr. José Jonay Ojeda Feo
Dr. Esteban Frauca Remacha
Dr. Eduardo López Granados
María Jesús Pascau González-Garzón
Coordinator of the Nursing WG
Dr. Javier Cobas Gamallo
Dr. Juan José Ríos Blanco
TransplantChild Technical Secretariat
Marisa Tejedor Botello
Laura Pruneda González
Ana Merino Fernández
Project Manager Assistant
Dr. Yadira Bravo Gallego
Miguel Clemente Bernal
Communications and Analysis Manager
Miguel Piró Cristóbal
eHealth Support Manager
Members of the network
- Cliniques Universitaires Saint-Luc
- Princess Elisabeth Children’s Hospital
- Bicêtre Hospital
- Hôpital Necker-Enfants malades
- HUS Helsinki University Hospital
- Hannover Medical School
- University Medical Center Hamburg-Eppendorf
- Azienda Ospedaliera di Padova
- Istituto Mediterraneo per i Trapianti e le Terapie ad alta specializzazione – ISMETT
- Ospedale Papa Giovanni XXIII
- Ospedale Pediátrico Bambino Gesù
- AOU Città della Salute e della Scienza di Torino
- Children’s Health Ireland
- Vilnius University Hospital Santariskiu Klinikos
- UMC Utrecht
- Amsterdam University Medical Centres
- University Medical Center Rotterdam
- Oslo University Hospital
- Children’s Memorial Health Institute
- Centro Hospitalar do Porto
- Centro Hospitalar e Universitário de Coimbra
- Hospital Santa Maria. Centro. Hospitalar Lisboa Norte
- Hospital Universitario La Paz
- Hospital Universitario Virgen del Rocío
- Hospital del Niño Jesús
- Hospital General Universitario Gregorio Marañón
- Hospital Universitario Vall d’Hebron
- Hospital Sant Joan de Déu & Clinic
- Children’s Hospital, Skåne University Hospital
- Karolinska University Hospital
- Sahlgrenska Universitetssjukhuset
- King’s College Hospital NHS Foundation Trust
- Centre for Pediatric Lung Transplantation, Medical University of Vienna
- University Hospital Centre Zagreb
- Odense University Hospital
- Copenhagen University Hospital Rigshospitalet
- Semmelweis University
- Tartu University Hospital
- Children’s Clinical University Hospital, Riga
- Centre Hospitalier du Luxembourg
- Mater Dei Hospital
European activity on PT
Interactive Map of Paediatric Transplantation Activity in Europe
About Interactive Map
The collected information about the paediatric transplantation activity across Europe during 2012-2016 enable us to define:
- Who we currently are (and what centers are currently not and should be in the network)
- To analyse the number and distribution of existing centers and transplantation programs
- To identify the equity in access to transplantation for pediatric candidates across Europe, and
- Extend the network to all EU member states and thus provide access to the network to all patients and families across the EU.
The Health Care working group through of multidisciplinary collaboration group decided to define the EU map of the paediatric transplantation activities, including both solid organ and hematopoietic stem cell transplants.
To achieve this goal, we kindly request the collaboration of all European National Agencies to provide paediatric donation and transplant information between the years 2012-2016. Information on transplanted patients under the age of 18 was collected including:
- The number of pediatric solid organ transplantations by type of organ (kidney, liver, lung, heart, and intestinal/multivisceral).
- The number of pediatric hematopoietic stem cell transplantations.
- The number of transplants (both solid organ and hematopoietic) per Hospitals of each country.
As agreed by all the attending Authorities at the 14th Meeting of the Competent Authorities held in Brussels (27-28th of June 2018), the ERN TransplantChild is putting together the paediatric transplantation in Europe to deliver a complete map of the activity and expertise. Until the end of December 2018, we have received a response from the following participants as representatives of their National agencies:
Violetta Marinkova – Senior Expert – Bulgarian Executive Agency for Transplantation
2. Czech Republic
Prof.MUDr. Miloš Adamec, CSc – ředitel KST – Koordinační středisko transplantací
Mrs. VIRGE PALL, MD – Director of Transplantation Centre – Tartu University Hospital
Hellenic Transplant Organization – Εθνικός Οργανισμός Μεταμοσχεύσεων
Lynn Martin – National Organ Donor Co-Ordinator – Organ Donation and Transplant Ireland
Paola Di Ciaccio – Head of Foreign Affairs Division – Italian National Transplant Centre – Italian National Institute of Health
Vita Petronytė – Senior specialist – Transplant Coordination Department – National Transplant Bureau – Under the Ministry of Health of the Republic Lithuania
Jarosław Czerwiński – Centrum Organizacyjno-Koordynacyjne do Spraw Transplantacji – “Poltransplant”
Catarina Bolotinha – Assessora da Coordenação Nacional da Transplantação – Serviços Centrais – Instituto Português de Sangue e da Transplantação, IP
MARINA ALVAREZ – Organización Nacional de Trasplantes – Ministerio de Sanidad, Consumo y Bienestar Social
Daniel Kuba, Magdaléna Krátka – Bratislava, Slovenská republika
Barbara Uštar – Zavod RS za presaditve organov in tkiv Slovenija-transplant – Ljubljana – Slovenija
13. United Kingdom
Rachel Hogg – ODT Statistical Enquiries – NHS -UK
14. Eurotransplant Austria, Belgium, Croatia, Denmark, Germany, Hungary, Netherlands, Switzerland
Jacob de Boer, MD – Medical Staff ET – Eurotransplant International Foundation – Josephine Wadewitz – Deutsche Stiftung – Organtransplantation – Germany
15. Scandiatransplant Denmark, Finland, Iceland, Norway, Sweden Ilse Duus Weinreich
Clinical Data and Office Manager – Scandiatransplant – Aarhus University Hospital, Skejby – Helle Thiesson – OUH – Odense Universitetshospital – Svendborg Sygehus
Activity data collection
The information was required in a determined format, and each agency should be structured Activity data according to the follow instructions:
- Divided by hospitals.
- Separated by age: one group for patients younger than 16 years old, and a second one for those between 16 and 18 years old.
- Type of transplant: HSCT, liver, kidney, heart, lung and Intestinal/multivisceral.
- Years range from 2012 to 2016.
- As an optional, for liver and kidney the data were discriminated by by living or cadaveric (deceased) donor. In the case of HSCT, the data were divided by autologous or allogeneic transplant. The Health Care working group through of multidisciplinary collaboration group decided to define the EU map of the paediatric transplantation activities , including both solid organ and hematopoietic stem cell transplants. In order to achieve the highest possible reliability of the data these have been requested through all possible available ways like the national agencies for organ donation and allocation, European transplantation scientific societies, and center own registries . The map was prepared by the WG and was reviewed and approved by both the Group Coordinator and the Technical Director. The final version will be distributed online and the analysis of the results wil be discussed by the working group to obtain the mainly conclusions aligned to the objectives of this activity.
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.
Allocation of paediatric transplants in Europe
Allocation of paediatric transplants in Europe (0-16)
Allocation of paediatric transplants in Europe (17-18)
Total activity in Europe (2012-2016)
Integration systems for specific dataset, e-learning and support of ERN Core Services in the ERN TransplantChild
The main objective of this Action was to improve the use of European Reference Network on Transplantation in Children (ERN-TransplantChild) existing dataset(s) quality and data validation of the Clinical Patient Management System (CPMS) to increase the knowledge generation supported by e-learning training activities within the medical community and stakeholders, and ensure adequate and efficient use of the ERN core service platform (European Collaborative Platform and Clinical Patient Management System).
European Rare Disease Research Coordination and Support Action
GA number: 964908
The aim of the European Rare Disease Research Coordination and Support Action consortium (ERICA), in which all 24 European Reference Networks (ERNs) take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
European Joint Programme on Rare Diseases
GA number: 825575
The European Joint Programme on Rare Diseases (EJP RD) is a programme aiming to create an effective rare diseases research ecosystem for progress, innovation and for the benefit of everyone with a rare disease. We support rare diseases stakeholders by funding research, bringing together data resources & tools, providing dedicated training courses, and translating high quality research into effective treatments.
Support to Generic Services for the ERN TransplantChild
This Action builds upon the CEF-funded Action 2017-ES-IA-0102, which set up the ERN-TransplantChild Operational Helpdesk and Action 2018-ES-IA-0176 that focused on elearning/etraining activities and the creation of specific datasets of rare diseases. Through this Action, the ERN-TransplantChild will provide efficient support to new members and affiliated partners for the use of the ERN core services, ensure the data collection for the monitoring system and its validation, offer and develop continuous e-learning and e-training material in the field of paediatric transplantation for professionals and patient and improve the TransplantChild specific dataset in the CPMS to continuous monitoring of the adaptation to the registry.
PaEdiatric Transplantation European Registry “PETER”
GA number: 947629
The PaEdiatric Transplantation European Registry (PETER) will be a platform focused on paediatric transplantation within the EU, including all types of transplantations (i.e., both solid organ transplantation –SOT- and haematopoietic stem cell transplantations-HSTC-). This platform integrates information from clinicians and patients into research projects.