both Solid Organ Transplantation (SOT) and Hematopoietic Stem Cell Transplantation (HSCT) which are low-prevalence and complex conditions that requires highly specialized expertise and resources.
They aim to tackle complex or rare medical diseases or conditions that require highly specialised treatment and a concentration of knowledge and resources. Medical knowledge and expertise travel rather than patients, using a dedicated IT platform and telemedicine tools to review a patient’s diagnosis and treatment.*
There is evidence that paediatric transplantation is the only curative therapeutic procedure targeted to the children population that has the highest mortality rates in their age group. The current approach is performed focused on a specific disease or organ.
Dr. Samantha Anthony was invited to the 7th Board of the Network to present her project: "Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review". She is a Social Worker within the Transplant and Regenerative Medicine Centre and a Health Clinician Scientist at SickKids. Dr. Anthony is a Scientist-Track Investigator in the Child Health Evaluative Sciences Program of the Research Institute. She leads a clinical research program focused on establishing a foundation for successful psychosocial adaptation and enhanced quality of life for children with chronic disease, with a particular focus on solid organ transplantation. Patient-
The ERNs help patients with rare or low-prevalence complex diseases. A disease is defined as rare when it affects fewer than one in 2 000 people, is serious, chronic and often life-threatening. Between 5.000 and 8.000 of rare diseases affect the daily life of around 30 million people in the EU.
ERNs’ virtual consultations are carried out through the CPMS system, these advisory boards follow a series of steps listed below. Experts across Europe are invited to collaborate giving advice in consultation panels in the diagnosis or treatment of low prevalence and complex conditions
Paediatric ERNs Crosslinks: The story of Íñigo
Helping patients with low-prevalence rare or complex diseases.
Story of Paula
end-stage disease with a more sustainable chronic disease state and as such has profound clinical and psychosocial consequences, even more challenging in children, with more impact on the growing process.
Is a cross-cutting approach to supports common areas in different types of transplants as immunosuppression, rejection, tolerance, risk of infection and psychosocial wellbeing.
Transplanted children shift their primary disease to lifelong chronic condition or `disease´, mostly imposed by the necessary treatment regimens to avoid rejection.
This network is initially integrated for 18 HCP from 11 Members States with highly qualified multiprofesional teams and proven experience in PT.
TransplantChild is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are supported by the European Commission.