ERN TransplantChild
Transplantation in Children
European reference networks
(ERN) are virtual networks involving healthcare providers across Europe for share knowledge in the patient’s diagnosis and treatments.
TransplantChild is an ERN for Paediatric Transplantation
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.
Paediatric Transplantation
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.
Latest News
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Patient Reported Outcomes Measures
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-
engagement, mixed methods and Patient-Reported Outcomes Measures (PROMs) are all key elements of her research portfolio. From TransplantChild, we are willing to work and research in PROMs and Patient Reported Experiences Measures (PREMs). We will also integrate PROMs in our registry, so we will be collaborating with Dr. Anthony to keep promoting research in these areas.
The use of PROMs and PREMs in the paediatric transplanted patient's healthcare will allow to:- Give a general description of patients' health.
- Identify incipient conditions and disabilities.
- Monitor the evolution of the disease with the treatment.
- Evaluate the patients' perceived necessities.
- Create treatments consistent within patients' preferences and needs.
- Improve the communication between the clinician and the patient.
- Provide data reported by patients to improve quality.
- Standardise the interactions between patients and HealthCare Providers.
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CAN EUROPEAN REFERENCE NETWORKS HELP YOU?
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.
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ERN Virtual Consultation:
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
ERNs' Media
Paediatric ERNs Crosslinks: The story of Íñigo
Helping patients with low-prevalence rare or complex diseases.
Story of Paula
Latest Webinars
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05 12 2019 - Networking/Knowledge Management WG Meeting
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28 11 2019 - CPG Webinar Risk of Bias
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14 11 2019 - Registry General Considerations
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31 10 2019 - PaEdiatric Transplantation European Registry
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24 10 2019 - Healthcare WG Meeting
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10 10 2019 - Q&S WG Meeting
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26 09 2019 - CPG Webinar Data Extraction
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12 09 2019 - Registry Final Proposal
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05 09 2019 - TransplantChild All Groups update
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23 08 2019 - Registry Proposal Update
Transplantation in essence replaces
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.
The Network Scope
Is a cross-cutting approach to supports common areas in different types of transplants as immunosuppression, rejection, tolerance, risk of infection and psychosocial wellbeing.
The cross-cutting approach
Transplanted children shift their primary disease to lifelong chronic condition or `disease´, mostly imposed by the necessary treatment regimens to avoid rejection.
Members of the Network
This network is initially integrated for 18 HCP from 11 Members States with highly qualified multiprofesional teams and proven experience in PT.