As part of our series of interviews with the PedCRIN Consortium members, we had the pleasure to speak with Eric Vermeulen to ask about the role of the Dutch Patient Organization for Rare and Genetic Diseases (VSOP) in the PedCRIN project.
VSOP co-leads PedCRIN Work Package 5 (Communication & Dissemination) along with Sant Joan de Déu Foundation (FSJD). The goals of WP5 are to communicate the project to children, parents and families, industry, regulatory authorities, policymakers, healthcare providers and all the relevant stakeholders and to ensure that children, young people, parents and families are included in the PedCRIN activities. Additionally, this WP aims at educating and empowering young patients and their families during the entire process of a clinical trial. VSOP is also dedicated to accomplish several tasks in WP2 Sustainability and WP4 Support to Multinational Trials. The main duties of VSOP in the PedCRIN project are “the involvement of patients/parents in the three pilot studies and to deliver communication about the project to other partners and stakeholders through the newsletter”.
When asked about how can PedCRIN contribute to the current European framework of paediatric research, Eric states that PedCRIN is well equipped to aid multicentre and multinational clinical research in paediatrics. “The organisation has a specifically trained staff dedicated to this particular job. It creates a network, but is more than a network. This is precisely the reason why PedCRIN is a reliable partner in aiding clinical research in multiple countries”