Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europ
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(2020) 15:16
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Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild P. Jara1,2* , A. Baker3, U. Baumann4, A. M. Borobia5, S. Branchereu6, M. Candusso7, A. J. Carcas5, C. Chardot8, J. Cobas9, L. D’Antiga10, C. Ferreras1, E. Fitzpatrick11, E. Frauca2, F. Hernández-Oliveros12, P. Kaliciński13, C. Lindemans14, M. F. Lopes15, E. López-Granados16, C. de Magnée17, C. Mota18, J. M. Muñoz9, J. J. Ojeda9, A. Pérez-Martínez19, G. Perilongo20, J. Rascon21, M. Sciveres22, R. Stone23, V. Tarutis24, J. Toporski25, J. M. Torres1, L. Wennberg26 and On behalf of ERN TransplantChild
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, Quality of life
Background Paediatric transplantation (PT) is the only curative therapeutic procedure for most end-stage diseases affecting different organs and body systems, achieving transformative impact on the health and quality of life (QoL) of children. Between 2012 and 2016, 7.741 solid organ transplants (SOT) were performed on children in 23 * Correspondence: [email protected] 1 Institute for Health Research (IdiPAZ), La Paz University Hospital, Madrid, Spain 2 Pediatric Hepatology Department, La Paz Children’s University Hospital, Madrid, Spain Full list of author information is available at the end of the article
European Union (EU) countries [1], increasing to 1.294 in children of up to 15 years old in 2016 in 28 EU states [2]. In 2012 a total of 4.041 paediatric patients received haematopoietic stem cell transplant (HSCT) in 28 EU and 10 affiliated states [3]. This means that more than 5.000 children receive one type or the other transplant in Europe each
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