On 27-28 March 2019, the EPTRI (European Paediatric Translational Research Infrastructure) 3rd General Assembly meeting took place in Madrid at the Ministry of Health.
The event was the occasion to take stock of the situation on the activities and the goals achieved in the first year of the project as well as the future perspectives and objectives of EPTRI , the European project, funded within H2020 Infradev-01-2017 call and coordinated by Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) with the aim to design a new paediatric Research Infrastructure (RI), intended to accelerate paediatric drug development including most relevant technological innovations in research for children’s health.
The first part of the event was dedicated to the workshop on Patient and Public Involvement in Research, underlining the necessity of paediatric patients’ involvement in the whole drug development process as well as the importance of the support of the Young Persons Advisory Groups (YPAGs) in the EPTRI project and overall in the health research. Moreover, a roundtable with the Stakeholders was held and involved representatives from Paediatric Networks, Research Infrastructures, ERNs (European Reference Networks), Charities, Patient’s associations, YPAGs (Young Patients Advisory Groups), Companies’ Federation, Regulatory Agencies, Governments, Authorities, with the aim to promote the entrance of EPTRI in a global framework of partnership able to strengthen paediatric research.
The second day of the meeting was focused on the activities carried out in the context analysis of the project and provided the occasion to present the sustainability model of EPTRI in the European scenario as well as to discuss the role of each country in the building of this new RI. Moreover, in the framework of the WP9 actvities a survey has been launched to acquire preliminary ideas and feelings from the future users, as well as information on their interests and needs in terms of access, costs and barriers to the participation.
The survey takes less than 15 minutes to complete and is available at this link: https://www.surveymonkey.de/r/HRCX552
For further information click here.