TransplantChild Representative Members - European Reference Networks launch Conference, held in Vilnius on March 9-10th 2017
TransplantChild focuses on a low prevalent and complex clinical condition in children, the transplant and includes solid organ transplantation (SOT) / hematopoietic stem cell transplantation (HSCT), multiple SOT or combined procedures, with a specific `cross-cutting approach´
Transplanted individuals shift their primary disease to a chronic condition of immunosuppression to avoid rejection, requiring a proper monitoring and handling of post-transplant complications.
- Both pre and post-transplant mortality and morbidity rates are still high in children
- Longer life expectancy in children poses a greater risk of prolonged and severe side effects related to long-term immunosuppressiondisabilities and secondary cancer
- Physiological immaturity of many organs and body systems, specially the immune, metabolic, and endocrinology systems, the impact on the growing and developmental process and other considerations make PT a singular entity when compared to adult transplantation.
– Making available the latest techniques and medical, pharmacological and therapeutic advances;
– Reducing the hospitalisation time;
– Reducing the use of complex and long-lasting treatments;
– Allowing the development of personalised medicine;
– Reducing mortality and morbidity related to PT
– Providing psycho-social support to children during school age and their transition to adulthood;
– Facilitating awareness, self-control, training and participation of the patient/family in their condition care;
– Involving and giving voice to families and patients’ organizations and increasing society awareness.
– Favoring a higher statistical power when similar goals are pursued within network centres due to the higher amount of transplantation cases. Multicentre efforts are especially needed in PT as compared to adult transplantation;
– Allowing the identification of common topics to all types of transplants and the establishment of synergies from knowledge and results from different types and multiorgan transplants (e.g. knowledge in HSCT is being applied in SOT);
– Harmonising the treatment and care required and the use of preventive practices to anticipate and minimise the risks and onset complications (approach to chronicity and treatment of secondary illnesses associated to PT);
– Providing professionals with access to clinical excellence and providing support and training to regional, local and different levels of healthcare;
– Making available guidelines for standardised, safe and approved clinical practices;
– Promoting the development of harmonized research lines to fill current gaps;
– Reducing the costs associated with transplantation, re-transplantation and pharmacological treatments;
– Improving health outcomes associated with PT, quality and safety in the provision of health care, and the satisfaction of patients and their families;
– Facilitating access to first-level centres and fields of research;
– Making available harmonised clinical practice guidelines to be used across healthcare services;
– Having professionals specialised in highly complex procedures, which in turn provide support services to professionals at different levels of health care, in particular primary care professionals;
– Sharing information with other stakeholders.