What is ERN- TransplantChild?
Is a European Reference Network (ERN) for Paediatric Transplantation, it focuses on both Solid Organ Transplantation (SOT) and Hematopoietic Stem Cell Transplantation (HSCT) which are low-prevalence and complex conditions that require highly specialized expertise and resources. In ERNs medical knowledge and expertise travel rather than patients, using a dedicated IT platform and telemedicine tools to review a patient’s diagnosis and treatment.*
*Allocation of/and access to organs for the purpose of organ transplants is not included in the network scope as established in the Directive 2011/24/EU
In relation to the implementation of Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare, ERN TransplantChild offers the following services and information:
- Expert virtual clinical advice on the entire transplant process through the Clinical Patient Management System (CPMS). Organ access and allocation are not included in the network’s services.
ERNs are not directly accessible to individual patients/families. However, with the patients’ consent and in accordance with the rules of their national health system, patient case can be referred to the centre/s involved in TransplanChild in their country by their local hospital.
For additional information about cross-border care for patients when travelling/living in another EU country, visit “Your Europe” website: https://europa.eu/youreurope/citizens/health/index_en.htm
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Working Groups
TransplantChild Strategic Areas
Healthcare
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Knowledge and Networking
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Knowledge management is a systematic and organised approach to making relevant knowledge visible and widely accessible by identifying and mapping existing intellectual assets as well as creating new knowledge within the organisation.
Research
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Multidisciplinary research approaches promoted from the HCPs carrying out paediatric transplantation will provide clear benefits and understanding of the uptake and costs would be useful in health care planning.
Clinical guidelines
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The development of clinical practice guidelines (CPG) is an essential tool for improving clinical care and to facilitate knowledge acquisition from routine practice as well as for the development of formal clinical investigation.
Quality and Safety
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Effective quality management at ERN level must recognise the contributions and the needs of all partners in the process, from the medical experts and care personnel to the patient and family members, the analysts and interpreters of results.
Education and training
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It is necessary to develop a common education and training strategy that centres on these topics. This area focuses on providing best education and training programmes for professionals, nurses and patients and families.
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ERN Media
Dissemination WG: Testimonies e book
From the TransplantChild Dissemination WG we are aiming to gather testimonies from patients from all around Europe.In some cases, receiving a transplantation is the only treatment for a person living with a Rare Disease, but paediatric transplantation is a highly...
Calendar
Monday, July 5
E-learning sessions
Thursday, July 18
CPG WG meeting
Friday, August 1
Q&S WG meetingg