Orphanet Journal of Rare Diseases (Jan 2020)
Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
- P. Jara,
- A. Baker,
- U. Baumann,
- A. M. Borobia,
- S. Branchereu,
- M. Candusso,
- A. J. Carcas,
- C. Chardot,
- J. Cobas,
- L. D’Antiga,
- C. Ferreras,
- E. Fitzpatrick,
- E. Frauca,
- F. Hernández-Oliveros,
- P. Kaliciński,
- C. Lindemans,
- M. F. Lopes,
- E. López-Granados,
- C. de Magnée,
- C. Mota,
- J. M. Muñoz,
- J. J. Ojeda,
- A. Pérez-Martínez,
- G. Perilongo,
- J. Rascon,
- M. Sciveres,
- R. Stone,
- V. Tarutis,
- J. Toporski,
- J. M. Torres,
- L. Wennberg,
- On behalf of ERN TransplantChild
Affiliations
- P. Jara
- Institute for Health Research (IdiPAZ), La Paz University Hospital
- A. Baker
- Pediatric Liver, GI and Nutrition Centre, King’s College Hospital
- U. Baumann
- Department for Pediatric Kidney, Liver, and Metabolic Diseases, Division of Pediatric Gastroenterology and Hepatology, Hannover Medical School
- A. M. Borobia
- Clinical Pharmacology Department, La Paz University Hospital
- S. Branchereu
- Pediatric Surgery Department, Hospital du Kremlin Bicêtre
- M. Candusso
- Division of Hepatology and Gastroenterology, Bambino Gesù Children’s Research Hospital IRCCS
- A. J. Carcas
- Clinical Pharmacology Department, La Paz University Hospital
- C. Chardot
- Pediatric Surgery Department, Hospital Necker enfants malades
- J. Cobas
- La Paz University Hospital
- L. D’Antiga
- Centre for Pediatric Hepatology, Gastroenterology and Transplantation, Hospital Papa Giovanni XXIII
- C. Ferreras
- Institute for Health Research (IdiPAZ), La Paz University Hospital
- E. Fitzpatrick
- Paediatric Liver Centre, King’s College London at King’s College Hospital
- E. Frauca
- Pediatric Hepatology Department, La Paz Children’s University Hospital
- F. Hernández-Oliveros
- Pediatric Surgery Department, La Paz University Hospital
- P. Kaliciński
- Department of Pediatric Surgery and Organ Transplantation, Children’s Memorial Health Institute
- C. Lindemans
- Pediatric Blood and Marrow Transplantation Program, University Medical Center
- M. F. Lopes
- Department of Pediatric Surgery, Pediatric Hospital, Centro Hospitalar e Universitário de Coimbra
- E. López-Granados
- Department of Clinical Immunology, La Paz University Hospital, IdiPAZ
- C. de Magnée
- Department of Pediatric Surgery, Cliniques Universitaires St Luc (Bruxelles-Université Catholique de Louvain), Saint-Luc University Hospital
- C. Mota
- Department of Paediatric Nephrology, Paediatric Service, Centro Materno Infantil do Norte, Centro Hospitalar do Porto
- J. M. Muñoz
- La Paz University Hospital
- J. J. Ojeda
- La Paz University Hospital
- A. Pérez-Martínez
- Pediatric Hemato-Oncology, La Paz University Hospital, IdiPAZ
- G. Perilongo
- Department of Pediatrics, University Hospital of Padua
- J. Rascon
- Center for Pediatric Oncology and Hematology, Children’s Hospital, Affiliate of Vilnius University Hospital Santaros Klinikos
- M. Sciveres
- Pediatric Hepatology and Liver Transplantation, ISMETT UPMC Palermo
- R. Stone
- Unidade de Nefrologia e Transplantação Renal Pediátrica. Hospital de Santa Maria, Centro Hospitalar de Lisboa Norte
- V. Tarutis
- Centre of Cardiac Surgery, Vilnius University Hospital Santariskiu Klinikos
- J. Toporski
- Department of Pediatrics, Skåne University Hospital
- J. M. Torres
- Institute for Health Research (IdiPAZ), La Paz University Hospital
- L. Wennberg
- Department of Transplantation Surgery, Karolinska University Hospital
- On behalf of ERN TransplantChild
- DOI
- https://doi.org/10.1186/s13023-020-1293-0
- Journal volume & issue
-
Vol. 15,
no. 1
pp. 1 – 9
Abstract
Abstract The low prevalence of European paediatric transplanted patients and scarcity of resources and expertise led to the need for a multidisciplinary network able to improve the quality of life of paediatric patients and families requiring a solid organ or haematopoietic stem cell transplantation. The European Reference Network (ERN) TransplantChild is one of the 24 ERNs established in a European legal framework to improve the care of patients with rare diseases. ERN TransplantChild is the only ERN focused on both solid organ and haematopoietic stem cell paediatric transplantation, based on the understanding of paediatric transplantation as a complex and highly specialised process where specific complications appear regardless the organ involved, thus linking the skills and knowledge of different organ disciplines. Gathering European centres of expertise in paediatric transplantation will give access to a correct and timely diagnosis, share expertise and knowledge and collect a critical mass of patients and data that increases the speed and value of clinical research outcomes. Therefore, the ERN TransplantChild aims for a paediatric Pan-European, Pan-transplant approach.
Keywords
- Paediatric
- Transplantation
- Solid organ transplantation
- Surgical procedures
- Haematopoietic stem cell transplantation
- Post-transplant management
