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Project abstract

ERNs should link existing highly specialised healthcare providers, as expertise in rare or lowprevalence
complex disease or conditions is scarce and dispersed. ERNs will facilitate timely access
to care by centralising knowledge and experience, research and training for these diseases and
conditions. We propose TRANSplantCHILD based on the understanding of transplantation in children as
a low-prevalence complex medical condition that requires highly specialised expertise and
Paediatric transplantation (PT), both solid organ (SOT) and hematopoietic stem cell transplantation
(HSCT), is the only curative procedure for several rare diseases causing the highest mortality rate in
European children. Paediatric surgical procedures allow transplantation of virtually all organs, but a
clear gap yet exists, as proper post-transplant care constitutes a challenge that demands the
multidisciplinary coordinated efforts of organ-focused specialists, especially when more than one
organ is transplanted, with other specialised clinical and laboratory resources that support the
transplantation procedure in common processes for SOT and HSCT as immunosuppression,
immune reconstitution, rejection, tolerance, risk of infection, second malignancies, etc.
In addition, other areas of non-medical supportive care need to be in place for children and their
families, due to severe psychological and socio-economic issues that extend to adulthood. Costeffective
measures will clearly be beneficial in PT when compared to those obtained in adults as life
expectancy after transplantation is much longer.
Transplanted individuals shift their primary disease to a chronic condition of immunosuppresion to
avoid rejection, requiring proper monitoring and care of post-transplant complications. This state is
even more life-conditioning for children, demanding even more expertise in reference centres
connecting multidisciplinary medical expertise, transfer of knowledge and innovative medicine as