当前位置: X-MOL 学术Orphanet J. Rare Dis. › 论文详情
Our official English website, www.x-mol.net, welcomes your feedback! (Note: you will need to create a separate account there.)
Cross-cutting view of current challenges in paediatric solid organ and haematopoietic stem cell transplantation in Europe: the European Reference Network TransplantChild.
Orphanet Journal of Rare Diseases ( IF 3.7 ) Pub Date : 2020-01-15 , DOI: 10.1186/s13023-020-1293-0
P Jara 1, 2 , A Baker 3 , U Baumann 4 , A M Borobia 5 , S Branchereu 6 , M Candusso 7 , A J Carcas 5 , C Chardot 8 , J Cobas 9 , L D'Antiga 10 , C Ferreras 1 , E Fitzpatrick 11 , E Frauca 2 , F Hernández-Oliveros 12 , P Kaliciński 13 , C Lindemans 14 , M F Lopes 15 , E López-Granados 16 , C de Magnée 17 , C Mota 18 , J M Muñoz 9 , J J Ojeda 9 , A Pérez-Martínez 19 , G Perilongo 20 , J Rascon 21 , M Sciveres 22 , R Stone 23 , V Tarutis 24 , J Toporski 25 , J M Torres 1 , L Wennberg 26 ,
Affiliation  

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.

中文翻译:

欧洲小儿实体器官和造血干细胞移植当前挑战的横切观点:欧洲参考网络TransplantChild。

欧洲小儿移植患者的患病率较低,资源和专业知识的匮乏导致需要能够改善小儿患者和需要实体器官或造血干细胞移植的家庭生活质量的多学科网络。欧洲参考网络(ERN)的TransplantChild是在欧洲法律框架内建立的24个ERN之一,旨在改善对罕见疾病患者的护理。ERN TransplantChild是唯一专注于实体器官和造血干细胞小儿移植的ERN,其基于对小儿移植的复杂且高度专业化的理解,无论涉及哪个器官,都会出现特定的并发症,从而将不同器官的技能和知识联系起来学科。聚集欧洲小儿移植专业知识中心将提供正确,及时的诊断,共享专业知识和知识的机会,并收集大量的患者和数据,从而提高临床研究成果的速度和价值。因此,ERN TransplantChild旨在实现一种儿科泛欧洲泛移植方法。
更新日期:2020-01-15
down
wechat
bug