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ERN-TRANSPLANTCHILD, a European strategy to attend “the secondary rare disease” induced by Paediatric Transplantation

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  • Authors:: Hernández F, Velázquez C, Gómez N, Rascon J, Chardot C, Canduso M, Lindemans C, Stone R, Sciveres M, Lopes MF, Baumann U, Fitzpatrick E, Kaliciski P, D'Antiga L, Branchereu S, Wennberg L, Perilongo G, Mota C, De Magnée C, Toporski J, Pérez-Martinez A, Frauca E, López-Granados E, Ojeda JJ, Borobia A, Carcas A, Torres JM, Ferreras C, Tejedor M, Muñoz JM, Cobas J Jara P - on behalf of ERN TransplantChild.
  • Congress / Event:: 9th European Conference on Rare Diseases and Orphan Products
  • Date:: 10-12 May 2018

 

Background: Pediatric transplantation (PT), including both solid organ (SOT) and hematopoietic stem cell (HCST), are highly complex procedures that have greatly improved survival of children over the last decades. A wide variety of rare diseases are beneficed by these procedures making multidisciplinary approach mandatory. In spite of the obvious differences, many issues are common for PT patients disregarding the type of SOT/HCST required: growth and development, psychological issues, social needs, school backwardness, hospital readmissions, etc. Our aim is to describe the original holistic, cross-cutting approach of ERN-TRANSPLANTCHILD aiming to improve of life expectancy and quality of life for all EU pediatric transplanted patients.

Methods: ERN-TRANSPLANTCHILD is focused on transplanted children. Transplantation is a highly specialized medical procedure that generates a low prevalent and complex chronic clinical condition in children, the transplanted child. ERN-TRANSPLANTCHILD aims at: (1) Ensuring patients access through the network to the best knowledge, healthcare practices and support procedures in PT. (2) Integrating “real” patient´s needs as the cornerstone of the ERN (3) Promoting best practices, training, research, and knowledge sharing. (3) Integrating stakeholders in the transplantation process and making available the knowledge and information. As established in the Strategic approach of ERN-TRANSPLANTCHILD, the strategic areas have been approved in order to ensure the achievement of the mission and vision of the Network: (1) To improve patient healthcare; (2) To harmonize clinical best practices; (3) To harmonize research and innovation; (4) To spread knowledge; (5) To foster education and training; (6) To promote network organization, quality and safety.

Results: ERN-TRANSPLANTCHILD integrates 18 Healthcare providers from 11 Members States (figure 1) with acknowledge expertise in PT. The crosscutting approach of ERN-TRANSPLANTCHILD allowed the identification of common topics to all transplanted children such as clinical, personal and socio-economic issues, personalized patient handling, life expectancy and long-term quality of life of children and their family. These common issues were addressed by: (1) developing of specific clinical practical guidelines for children (2) mapping healthcare providers structural and human resources (3) prioritizing research bearing in mind personalized medicine (4) Improving quality and safety indicators (5) identifying critical knowledge within the ERN (6) promoting networking within and outside the ERN.

Conclusion: ERN-TRANSPLANTCHILD changed the paradigm of disease/organ approach by a more holistic process approach. This vision allowed the development of an integrative model of healthcare, focused on patient´s needs, and conceived to promote best practices, knowledge sharing and translational research.

Read 263 times Last modified on Thursday, 20 December 2018 11:17
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