From 17th to 20th November the European Biobank Week 2020 took place in a virtual format. The conference was a joint effort of ESBB and BBMRI-ERIC and for the first time it was fully digitized. Within the event, the abstract “Paediatric patients’ involvement fostered by EPTRI” was chosen for an oral speech held by Dr. Donato Bonifazi within the session “The roles of patients in personalised medicine development – from participation to involvement”.
Specifically, his speech introduced the concept of the EPTRI new research infrastructure entirely dedicated to enhance paediatric research and foster innovation, which has always considered the young patients’ voice from the very early beginning. He presented also the activities that have been performed in encouraging patient involvement like the survey on oral formulations and the roundtable with the young people, organised in occasion of the 3rd EPTRI General Assembly in Madrid at the Spanish Ministry of Health, Consumption and Social Welfare, to bring the voice of the young people and discuss how to better include the preferences and needs of the patients.
Moreover, he presented the patient’s toolkit on paediatric translational research aimed to educate children and families on paediatric research.
Below it is possible to view the video of the presentation.
Furthermore, another speech about EPTRI has been presented by Prof. Elke Smits on “Making Paediatric Biobanking a Sustainable Reality in Belgium and beyond: the national EPTRI Joint Research Unit”. In her presentation, she introduced EPTRI aims and structure and presented the EPTRI Belgian Nation Node with its participants from Universities/University Hospitals from Flanders, Brussels and Wallonia regions, and objectives like valorise and foster translational paediatric research and support communication, education and training on the importance of paediatric research. She also showed that the Belgian respondents of the EPTRI WP3 surveys have expertise in “Paediatric Biomarkers and Biosamples” Thematic Research Platform in neonatology, neonatal and paediatric intensive care, cardiology, vascular diseases, gastroenterology, haematology, immunology, musculoskeletal diseases, nephrology, urology, neurology, nutrition, pulmonary and respiratory diseases.