As part of our series of interviews with the PedCRIN Consortium members, we had a pleasure to speak with Joana Claverol Torres to ask about the role of Sant Joan de Déu Research Foundation (FSJD) in the PedCRIN project.
FSJD co-leads PedCRIN Work Package 5 (Communication & Dissemination) along with Dutch Patient Alliance for Rare and Genetic Diseases (VSOP). The goals of the WP5 are to communicate about 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. It also intends to educate and empower young patients and their families during the entire process of a clinical trial and to do an evaluation about the impact of the education and empowerment activities on different target groups. FSJD is also committed to fulfill several other tasks in other WPs i.e. Sustainability and Support to multinational trials.
Joana thinks that the project is developing on the right path so far. “Its progress is being very positive: many different tools have been developed. She expects researchers and young patients to benefit from PedCRIN. “The project has proven that their involvement is feasible and that they can make important contributions to improve research projects”.