Members of the network

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.

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:

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

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.