Europe Biobank Week 2020 will take place between 17th-20th of November 2020 in a virtual format for the first time. This year two abstracts have been chosen for an oral speech on behalf of EPTRI, the European Paediatric Translational Research Infrastructure.
The speech of Prof. Elke Smits will be on “Making Paediatric Biobanking a Sustainable Reality in Belgium and beyond: the national EPTRI Joint Research Unit”. In her presentation, she will introduce EPTRI aims and structure. Moreover, she will present 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 will also show 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.
The speech of Dr. Donato Bonifazi will be on the “Paediatric patients’ involvement fostered by EPTRI, the European Paediatric Research Infrastructure”. Specifically, his speech will introduce the concept of the 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 will present also the activities that have been performed in encouraging patient involvement like the survey on oral formulations and the focus group with the 29 project partners to evaluate the expertise of the European institutions in activities of patient and public involvement. Moreover, EPTRI has developed a patient’s toolkit on paediatric translational research to educate children and families on paediatric research, and has organised a roundtable with young people, 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, involving the Young Persons Advisory Groups (YPAGs) of Barcelona, Bari, Madrid and Tirana, that are groups of young people (both patients and healthy volunteers from 12 to 18 years old) linked to academic institutions and children’s hospitals.