Information for Patients

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General Info

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources.

TransplantChild is the ERN on paediatric transplantation. It encompasses both solid organ transplantation (SOT), included multiorgan and complex procedures, and hematopoietic stem cells transplantation (HSCT). The main goal is to have a significant impact on children’s quality of life in the long term. To achieve it, the methods implemented are: giving the patients network access to diagnostic advice and joining with members of the network and stakeholders to increase the information, innovate and expertise in the transplant procedures. 

TransplantChild involves 26 hospitals (17 full member and 9 affiliated partners) from 19 countries.   

The Network members are committed to collaborating closely in order to improve the health outcomes of their patients. Clinical registries are indispensable instruments to provide demographic and natural history information. More than 30 registries on transplantation are currently active across Europe, most of which are limited to regional or national patient coverage and are focused on a single type of transplant (kidney, liver, SOT, etc.). While the existing registries are collecting important information, none of them is focused on all type of paediatric transplantation and is currently used in all TransplanChild centers. 

Paediatric Transplantation European Registry (PETER) is a new rational, efficient, interoperable, open, accessible paediatric transplant registry for all type of paediatric transplantation. PETER will allow generating real world evidence monitoring by the identification of common outcomes for all types of transplant. This registry can be used as a model to support care and research for the benefit of patients, improvement of the transplanted patient healthcare, their life expectancy and long-term quality of life of children and their families. 

PETER is aimed to describe the health status of patients transplanted in pediatric age. Specific aims are to: 1. measure quality of life (global and associated with pediatric transplantation); 2. monitor the progression of the disease and its response to treatment; 3. correlate the changes during the transplantation process with the patient’s quality of life; 4. assess the need focused on the patients; 5. propose changes in the management of patients, according to the needs detected. 

PETER leans on an interoperable technology platform with a module of business intelligence that will allow it to be a predictive registry directly impacting on the process of patient care, improving the process personalised clinical decision-making in the healthcare systems. 

Access to PETER is strictly regulated to protect the data privacy rights of the patients. Only authenticated users can request access to use PETER. Access of authorized users to the registry is controlled by assignment of a secure, individualized password. PETER has member Healthcare Provider centres (HCP) and it is envisaged that the users of PETER are Health Professionals (HP) within these Healthcare Provider centres (HCPs). The data entered will only be visible to the investigators of the Center and will not be shared with other users of the registry, except in aggregated format for benchmarking purposes. Patients must give their consent for data use in ERN registries and databases. 

PETER includes solid organ and/or hematopoietic stem cells transplant recipients <18 years of age followed up at the hospital that registers them. Data are collected from pre-transplant time (waiting list) to long-term post-transplant follow up. Collected data include clinical data (patient’s status, graft’s status, complications) as well as patients reported outcome measures, in order to document long-term needs of patients, the impact of the transplants and transition from childhood to adulthood, both from the medical, social, familial, quality of life perspectives.