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.
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