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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II Solidary Run
La Paz University Hospital, TransplantChild Coordinator Centre, is organizing the II Solidary Run for Paediatric Transplantation. It will take place on May 15th in Madrid. This event aims to make visible the importance of treatment and research in transplantation in children. Registration is already open!
Check the website for more information and registration:
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2nd TransplantChild Workshop
Dear colleagues,
We are organizing the 2nd TransplantChild workshop on translational research: "Novel strategies in paediatric transplantation". We wanted to know if you wanted to collaborate with the course by giving some support or disseminating this email.
The workshop will take place in Warsaw, Poland, on May 14th 2020. The main aim is addressing training in the area of paediatric transplantation according to the holistic approach of the network, providing skills to perform a common and transversal approach to all types of paediatric transplantation procedures. This edition will be focused on medical and nursing teams involved in the follow-up of paediatric transplanted patients.
Registration for the workshop is already open. You can also submit your abstract and be eligible to obtain a grant that will cover the workshop fee. You can submit an abstract for the following categories:
- Oral Presentations: Aimed at Nursing Teams. 20 minutes talks related to the area of the course.
- Clinical Cases: Oriented to Medical Teams. 20 minutes presentation of a clinical case of paediatric transplantation.
- Poster Presentations: For both Nursing & Medical Teams. Posters related to translational research in paediatric transplantation to be presented in a Poster Walk.
The registration form, abstract submission and all the workshop information is available on the website: https://www.transplantchild.eu/course2020/workshop/
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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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13 02 2020 - Quality & Safety WG meeting
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06 02 2020 - Healthcare WG meeting
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16 01 2020 - Nursing Teams WG Presentation
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09 01 2019 - Education & Training WG Meeting
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19 12 2019 - Education & Training WG Meeting
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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
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.