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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:: .4th conference on European Reference Networks Brussels 21-22 November 2018
  • Date:: .21-22 November 2018

Background:
Paediatric 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.

Methods:
The following strategic areas have been approved in order to ensure the achievement of the mission and vision of the Network: (Figure 1).

ERN TransplantChild aims to increase life expectancy and quality of life of paediatric patients and their families, providing added value by:
(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.
(4)Integrating stakeholders in the transplantation process and making available the knowledge and information.

Results: The crosscutting approach of ERN TransplantChild allows the identification of common topics to all transplanted children such as clinical, personal and socio-economic issues, personalised patient handling, life expectancy and long-term quality of life of children and their family.

These common issues were addressed by: (1) development of specific clinical practical guidelines for children; (2) mapping healthcare providers structural and human resources; (3) prioritising research bearing in mind personalised medicine; (4) Improving quality and safety indicators; (5) identifying critical knowledge within the ERN; (6) promoting networking within and outside the ERN.

To ensure patient involvement and the participation and empowerment of patients and their families, ERN TransplantChild has integrated the patients subcommittee in which currently 20 patient’s associations from 10 countries participate in the activities of the subcommittee to ensure consistency in the development of the Network.

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 101 times Last modified on Thursday, 20 December 2018 11:21
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