On 19th and 20th November 2019, the Annual meeting “Clinical Trials Europe” was held in Barcelona and provided the occasion to bring the clinical community together. The participants had the possibility to share and discuss fresh perspectives and practises for clinical management, patient centricity, drug development operating environment and digital revolution.
TEDDY Network participated in the Conference providing its contribution in terms of good practises for the promotion of medicines development for children. In particular, Begonya Nafria Escaler, Patient Engagement in Research Coordinator at Barcelona Children’s Hospital Sant Joan de Déu, Jennifer Preston, Senior Patient and Public involvement Manager at University of Liverpool and Mariangela Lupo, Communication and Patient Advocacy Manager of TEDDY Network, were part in the Conference in the Session “Young patient and family involvement in paediatric drug development”.
They provided an overview on the ethical and practical challenges surrounding the involvement of children and families in drug development research as well as on the best practises and lessons learned when involving children and families across Europe.
We asked to Mariangela Lupo which have been the last efforts taken by TEDDY in terms of children engagement in clinical research: “TEDDY Network promoted the creation of the first Italian and Albanian Young Persons Advisory Groups (YPAGs), respectively KIDS Bari and KIDS Albania, ensuring that the voice of children and families in health, medicine, research are taken into account to optimize the overall paediatric drug development process.
Moreover, TEDDY is one of the beneficiaries of the European Joint Programme on Rare Disease (EJPRD), a project aimed to improve integration, efficacy, production and social impact of research on rare diseases. In the framework of this project, TEDDY will be in charge of the development of educational materials and activities with the scope to train paediatric expert patients. The overall aim of these action is to build and promote the capacity of the patient community that will be able to be an active actor in the research on rare diseases”. Mariangela Lupo underlined why it is so important to increase awareness and promote the patient engagement: “Engaging and empowering patients into research and provide them with the tools to apprehend and contribute to innovation and therapy development should be included among the standard best practise. For this reason, TEDDY Network is always proactive to increase the awareness on this. Promoting further awareness and education, in fact, will help to overcome the issues related to access to trials, recruitment and retention in paediatric clinical research, and especially in case of rare diseases”.
