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

  • Patient Reported Outcomes Measures
    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 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.

     

  • CAN EUROPEAN REFERENCE NETWORKS HELP YOU?
    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.

     

    More information

  • ERN Virtual Consultation:
    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

     

    More Information

ERNs' Media

Paediatric ERNs Crosslinks: The story of Íñigo

 

 


Helping patients with low-prevalence rare or complex diseases.

 

 


Story of Paula

>

 

TransplantChild are integrated by 18 Healthcare Providers

View All Members

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.

Cookies make it easier for us to provide you with our services. With the usage of our services you permit us to use cookies.
More information Ok