People registered on this platform will help to include the vision of patients in the process of developing clinical trials in pediatrics. In all activities, the participation of pediatric patients will be prioritized and, when this is not possible, that of their caregivers.
This initiative is part of the "Conect4Children" (c4c) project, a collaborative network created to conduct pediatric clinical trials in Europe.
The Institut de Recerca Sant Joan de Déu · Hospital Sant Joan de Déu, as coordinator of the participation of expert patients in c4c, seeks young patients and young adults, caregivers and professionals of patient organizations interested in being part of the first database European patient expert in pediatric diseases.
The objective is to ensure an active and central role of patients in the development of clinical trials managed by c4c. Any person registered in the database may be contacted to participate in activities that will be conducted in the different phases of the execution of a clinical trial. In this way, patients can contribute to discussions related to the prioritization of unmet research needs, review a research protocol or ensure that the information given to patients participating in a trial is understandable to them.
Previous experience in similar activities and the non-existence of conflict of interest are elements that will be considered in the candidate selection process. This information is required in the process of registering to the database and is a way to ensure that the selected people meet the appropriate requirements for each type of activity.
Click on the following link if you want to register or get more information about this innovative initiative, which aims to involve patients and their caregivers in the development of new treatments in the area of pediatrics.