Transplant child, A European Strategy to Attend “The Secondary Rare Disease” Induced by Pediatric Transplantation

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Abstract

Background

Paediatric transplantation (PT), both solid organ (SOT) and hematopoietic stem cell transplantation (HCST) are highly complex procedures that has greatly improved survival of children with end-stage diseases. A wide variety of rare diseases are beneficed by these procedures. In spite of the obvious differences, many issues are common for PT patients disregarding the type of organ/HCST: immunosuppression, immune reconstitution, rejection, tolerance, risk of infection, growth, quality of life and psychosocial wellbeing, This paper describes the original holistic, cross-cutting approach of TRANSplantCHILD aiming to improve of life expectancy and quality of life for all EU paediatric transplanted patients.

Methods

TRANSplantCHILD is an European reference network (ERN) focused on a highly specialized medical procedure that generates a low prevalent and complex chronic clinical condition in children, the –transplanted child. TRANSplantCHILD aims are: (1) Ensuring their access through the network to the best possible care practices and support procedures related to a transversal and multidisciplinary approach to children´s transplant. (2) Developing and gathering efforts within the network for integrative, innovative and better procedures, information, training, knowledge and expertise. (3) Integrating stakeholders in the transplantation process and making available the knowledge and information. Strategic areas have been approved in order to ensure the achievement the objectives of the Network: (1) To improve patient healthcare; (2) To harmonise clinical best practices; (3) To harmonise research and innovation; (4) To spread knowledge; (5) To foster education and training; (6) To promote network organization, quality and safety.

Results

TRANSplantCHILD integrates 18 Healthcare providers from 11 Members states which have proven experience in PT and related complications in order to gather the knowledge and experience available throughout the EU. The crosscutting approach of TRANSplantCHILD allowed the identification of common topics to all transplants such as clinical, personal and socio-economic issues, personalized transplanted patient handling, life expectancy and long-term quality of life of children and their family. The governance structure, the patient's pathway, and the healthcare structure have been designed and defined. In order to develop the strategic lines, eight working groups have been defined and appointed: healthcare, research, education & training, clinical guidelines, safety & quality, knowledge & networking.

Conclusion

A new view is mandatory to address common issues in transplantd children. TRANSplantCHILD focuses the PT as a process approach instead of a disease/organ approach, developing an integrative model for share within the network the knowledge or expertise from highly specialised support and advice at national healthcare providers for the transplanted

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