Our second session of the PedCRIN webinar series will be focused on patient engagement in clinical research, specifically on the involvement of families and young people. The speakers are Eric Vermeulen from VSOP (Dutch Patient Alliance for Rare and Genetic Diseases) and Begonya Nafria from FSJD (Sant Joan de Déu Research Foundation). In order to develop efficient paediatric clinical trials, it is essential to involve patients and families. Within the PedCRIN project, we have analysed different models of involving patients and families in academic studies. In this webinar, we will share lessons learned through the application of these models and will explain how you can plan patient involvement in your studies.
These webinars are addressed to researchers and medical professionals interested in conducting paediatric clinical research but are also open to patient associations, patient advocates and expert patients. Registration is mandatory and free of charge.
Managing paediatric clinical trials is a challenging endeavour due to the intrinsic characteristics of the paediatric population: the limited number of eligible patients, the differences in pharmacokinetics and pharmacodynamics between children and adults and also among children of different ages, the need for implementing ad hoc study procedures, the ethical considerations and the general perception that paediatric patients are vulnerable study subjects all unite to raise the complexity of clinical studies. PedCRIN developed and/or adapted existing tools to be used for the setup and management of these studies. This webinar will present two different instruments.