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Hospital La Paz hosts the 4th meeting of the European Reference Network TransplantChild (0)

Madrid hosted in Hospital La Paz the 4th meeting of the European Reference Network TransplantChild



The Community of Madrid hosted the 4th meeting of the European Reference Network in Paediatric Transplantation (ERN TransplantChild) coordinated by the Hospital La Paz, with the attendance of the representatives of 16 of the 18 hospitals belonging to the network. Among the priority objectives of this meeting are the establishment of an informed consent for the virtual advice of patients and the constitution of the ethics committee of the network.

One year after its launch, the European Referent Networks such as TransplantChild, are helping patients to have access to diagnosis and treatment of rare diseases and highly complex procedures. Currently, more than 900 healthcare providers specialised from more than 25 countries of the European Union and Norway are participating, working together to improve the care of a broad group of patients with 24 thematic networks. TransplantChild is the only network focused on a complex procedure and it is also the only one that is coordinated from Spain. Hospital La Paz is a reference in Europe in paediatric transplantation since it can perform all type of transplants accredited to date. Last year, it carried out 24 liver, 5 intestine, 7 heart, one lung, 15 kidney and 30 haematopoietic progenitors transplants in children.

This year, progress has been made in the best care of paediatric transplanted patients through the use of an IT platform developed by the European Commission, and that in an innovative way, allows the virtual advice from a group of experts to any patient without having to travel. That implies sharing of knowledge, information exchange and reducing the difficulties caused to the patient by travelling between regions and countries in the European Union.

TransplantChild allows concentration of knowledge from experts in all type of paediatric transplants, both solid organ and haematopoietic progenitors, to advance in the improvement and quality of life, safety and care of the transplanted children and their families. During the first year, a focus has been made in the identification of topics of interest for the development of clinical guidelines, education activities and training of healthcare professionals, promotion of research, quality and safety of transplantation and also the identification of critical knowledge that would allow better resources and support in paediatric transplantation.

In order to inform better to patients about the resources available in transplantation, a review of more than 3.400 diagnoses collected by the Orphanet portal of rare diseases susceptible to a transplant has been carried out and the categories of diseases susceptible to solid organ or bone marrow transplantation have been created.

The network also participates in the initiative of the Joint Research Centre for the standardisation of registries in rare diseases and complex procedures. This is the first time that an effort has been made to standardise the registration process of paediatric transplantation and has been done with the support of the National Transplant Organisation and the Carlos III Health Institute through the Telemedicine and eHealth Research Unit.


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:


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:


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 SickKidsDr. 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:
  1. Give a general description of patients' health.
  2. Identify incipient conditions and disabilities.
  3. Monitor the evolution of the disease with the treatment.
  4. Evaluate the patients' perceived necessities.
  5. Create treatments consistent within patients' preferences and needs.
  6. Improve the communication between the clinician and the patient.
  7. Provide data reported by patients to improve quality.
  8. Standardise the interactions between patients and HealthCare Providers.


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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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


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