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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

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 Eur...

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Autores principales: Jara, P., Baker, A., Baumann, U., Borobia, A. M., Branchereu, S., Candusso, M., Carcas, A. J., Chardot, C., Cobas, J., D’Antiga, L., Ferreras, C., Fitzpatrick, E., Frauca, E., Hernández-Oliveros, F., Kaliciński, P., Lindemans, C., Lopes, M. F., López-Granados, E., de Magnée, C., Mota, C., Muñoz, J. M., Ojeda, J. J., Pérez-Martínez, A., Perilongo, G., Rascon, J., Sciveres, M., Stone, R., Tarutis, V., Toporski, J., Torres, J. M., Wennberg, L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6964053/
https://www.ncbi.nlm.nih.gov/pubmed/31941528
http://dx.doi.org/10.1186/s13023-020-1293-0
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author Jara, P.
Baker, A.
Baumann, U.
Borobia, A. M.
Branchereu, S.
Candusso, M.
Carcas, A. J.
Chardot, C.
Cobas, J.
D’Antiga, L.
Ferreras, C.
Fitzpatrick, E.
Frauca, E.
Hernández-Oliveros, F.
Kaliciński, P.
Lindemans, C.
Lopes, M. F.
López-Granados, E.
de Magnée, C.
Mota, C.
Muñoz, J. M.
Ojeda, J. J.
Pérez-Martínez, A.
Perilongo, G.
Rascon, J.
Sciveres, M.
Stone, R.
Tarutis, V.
Toporski, J.
Torres, J. M.
Wennberg, L.
author_facet Jara, P.
Baker, A.
Baumann, U.
Borobia, A. M.
Branchereu, S.
Candusso, M.
Carcas, A. J.
Chardot, C.
Cobas, J.
D’Antiga, L.
Ferreras, C.
Fitzpatrick, E.
Frauca, E.
Hernández-Oliveros, F.
Kaliciński, P.
Lindemans, C.
Lopes, M. F.
López-Granados, E.
de Magnée, C.
Mota, C.
Muñoz, J. M.
Ojeda, J. J.
Pérez-Martínez, A.
Perilongo, G.
Rascon, J.
Sciveres, M.
Stone, R.
Tarutis, V.
Toporski, J.
Torres, J. M.
Wennberg, L.
author_sort Jara, P.
collection PubMed
description 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.
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spelling pubmed-69640532020-01-22 Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild Jara, P. Baker, A. Baumann, U. Borobia, A. M. Branchereu, S. Candusso, M. Carcas, A. J. Chardot, C. Cobas, J. D’Antiga, L. Ferreras, C. Fitzpatrick, E. Frauca, E. Hernández-Oliveros, F. Kaliciński, P. Lindemans, C. Lopes, M. F. López-Granados, E. de Magnée, C. Mota, C. Muñoz, J. M. Ojeda, J. J. Pérez-Martínez, A. Perilongo, G. Rascon, J. Sciveres, M. Stone, R. Tarutis, V. Toporski, J. Torres, J. M. Wennberg, L. Orphanet J Rare Dis Position Statement 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. BioMed Central 2020-01-15 /pmc/articles/PMC6964053/ /pubmed/31941528 http://dx.doi.org/10.1186/s13023-020-1293-0 Text en © The Author(s). 2020 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Position Statement
Jara, P.
Baker, A.
Baumann, U.
Borobia, A. M.
Branchereu, S.
Candusso, M.
Carcas, A. J.
Chardot, C.
Cobas, J.
D’Antiga, L.
Ferreras, C.
Fitzpatrick, E.
Frauca, E.
Hernández-Oliveros, F.
Kaliciński, P.
Lindemans, C.
Lopes, M. F.
López-Granados, E.
de Magnée, C.
Mota, C.
Muñoz, J. M.
Ojeda, J. J.
Pérez-Martínez, A.
Perilongo, G.
Rascon, J.
Sciveres, M.
Stone, R.
Tarutis, V.
Toporski, J.
Torres, J. M.
Wennberg, L.
Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
title Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
title_full Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
title_fullStr Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
title_full_unstemmed Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
title_short Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild
title_sort cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in europe: the european reference network transplantchild
topic Position Statement
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6964053/
https://www.ncbi.nlm.nih.gov/pubmed/31941528
http://dx.doi.org/10.1186/s13023-020-1293-0
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