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.

Governance

TransplantChild Executive Committee

Transplantchild Executive Committe

Dr. Paloma Jara Vega

Dr. Paloma Jara Vega

Coordinator of ERN TransplantChild

Coordinator of the Networking & Knowledge Management WG

Dr. Antonio Javier Carcas Sansuán

Dr. Antonio Javier Carcas Sansuán

Coordinator of the Clinical Practice Guidelines WG
Dr. Francisco Hernández Oliveros

Dr. Francisco Hernández Oliveros

Coordinator of the Education & Training WG
Dr. José Jonay Ojeda Feo

Dr. José Jonay Ojeda Feo

Coordinator of the Quality & Safety WG
Dr. Esteban Frauca Remach

Dr. Esteban Frauca Remach

Coordinator of the Healthcare WG
Dr. Eduardo López Granados

Dr. Eduardo López Granados

Coordinator of the Research WG
María Jesús Pascau González-Garzón

María Jesús Pascau González-Garzón

Coordinator of the Nursing WG

Dr. Javier Cobas Gamallo

Dr. Javier Cobas Gamallo

CEO – Subdirector La Paz University Hospital
Dr. Juan José Ríos Blanco

Dr. Juan José Ríos Blanco

Medical Director La Paz University Hospital

TransplantChild Technical Secretariat

Marisa Tejedor Botello

Marisa Tejedor Botello

Project Manager

Technical Director

Laura Pruneda González

Laura Pruneda González

CPG Developer

Belén López Álvarez

Belén López Álvarez

E-learning Project Manager

Dr. Juan Manuel Torres Canizales

Dr. Juan Manuel Torres Canizales

Medical Supervisor

Gonzalo Sofío Toro

Gonzalo Sofío Toro

E-learning Project Manager

Dr. Carlos Martín Saborido

Dr. Carlos Martín Saborido

CPG Developer

Members of the network

Full Members

BELGIUM
  • Cliniques Universitaires Saint-Luc
FRANCE
  • Bicêtre Hospital
  • Hôpital Necker-Enfants malades
GERMANY

Hannover Medical School

ITALY
  • Azienda Ospedaliera di Padova
  • Istituto Mediterraneo per i Trapianti e le Terapie ad alta specializzazione – ISMETT
  • Ospedale Papa Giovanni XXIII
  • Ospedale Pediátrico Bambino Gesù
LITHUANIA
  • Vilnius University Hospital Santariskiu Klinikos
NETHERLANDS
  • Prinses Máxima Centrum
POLAND
  • Children’s Memorial Health Institute
PORTUGAL
  • Centro Hospitalar do Porto
  • Centro Hospitalar e Universitário de Coimbra
  • Hospital Santa Maria. Centro. Hospitalar Lisboa Norte
SPAIN
  • Hospital Universitario La Paz
SWEDEN
  • Children’s Hospital, Skåne University Hospital
  • Karolinska University Hospital
UNITED KINGDOM
  • King’s College Hospital NHS Foundation Trust

Affiliated Partners

AUSTRIA
  • Centre for Pediatric Lung Transplantation, Medical University of Vienna
CROATIA
  • University Hospital Centre Zagreb
HUNGARY
  • Semmelweis University
ESTONIA
  • Tartu University Hospital
LATVIA
  • Children’s Clinical University Hospital, Riga
LUXEMBOURG
  • Centre Hospitalier du Luxembourg
MALTA
  • Mater Dei Hospital
DENMARK
  • Rigshospitalet University Hospital
  • Odense University Hospital
  • European activity on PT

    Interactive Map of Paediatric Transplantation Activity in Europe

    About Interactive Map
    ERN Transplantchild wants to promote the visibility of information regarding pediatric transplantation by the creation of European pediatric transplantation map, in order to locate the specific experience, expertise, and knowledge in a field as wide as pediatric transplantation.
    Objectives

    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.
    Participants

    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:

    1. Bulgaria

    Violetta Marinkova – Senior Expert – Bulgarian Executive Agency for Transplantation

    2. Czech Republic

    Prof.MUDr. Miloš Adamec, CSc – ředitel KST – Koordinační středisko transplantací

    3. Estonia

    Mrs. VIRGE PALL, MD – Director of Transplantation Centre – Tartu University Hospital

    4. Greece

    Hellenic Transplant Organization – Εθνικός Οργανισμός Μεταμοσχεύσεων

    5. Ireland

    Lynn Martin – National Organ Donor Co-Ordinator – Organ Donation and Transplant Ireland

    6. Italy

    Paola Di Ciaccio – Head of Foreign Affairs Division – Italian National Transplant Centre – Italian National Institute of Health

    7. Lithuania

    Vita Petronytė – Senior specialist – Transplant Coordination Department – National Transplant Bureau – Under the Ministry of Health of the Republic Lithuania

    8. Poland

    Jarosław Czerwiński – Centrum Organizacyjno-Koordynacyjne do Spraw Transplantacji – “Poltransplant”

    9. Portugal

    Catarina Bolotinha – Assessora da Coordenação Nacional da Transplantação – Serviços Centrais – Instituto Português de Sangue e da Transplantação, IP

    10. Spain

    MARINA ALVAREZ – Organización Nacional de Trasplantes – Ministerio de Sanidad, Consumo y Bienestar Social

    11. Slovakia

    Daniel Kuba, Magdaléna Krátka – Bratislava, Slovenská republika

    12. Slovenia

    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.
    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.

    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)