The annual General Assembly (GA) meeting of the TEDDY Network was held virtually on 22nd June 2021. As every year, the TEDDY GA meeting registered high-level professionals among participants and speakers which were Network members as well as European Commission (EC), Council of Europe (CoE), Young Persons Advisory Groups (YPAG) and Academia representatives.
The meeting was opened by the TEDDY’s Chair, Annagrazia Altavilla who shared the activities carried out by TEDDY in the last year.
Among the main updates there were the presentation on the ongoing reform of legislation for ‘Medicines for children & rare diseases’ carried out by Fabio D’Atri, from the European Commission. The results of the Council of Europe /TEDDY survey on national provisions, guidelines and practices aimed at strengthening children’s participation in the decision-making process regarding their health, were also be presented by Laurence Lwoff, from the Council of Europe.
The second part was dedicated to the innovative methodologies for research in limited populations also highlighting the main issues related to alternative methodologies to generate evidence about treatments and healthcare strategies in children.
An overview on the evaluation of the off-label use of medicines in the paediatric population within an International/global perspective has also been provided, underlining differences existing between the regulatory approaches.
The European Paediatric Medicines Database (EPMD), tools developed by TEDDY was displayed as a key tool to create a harmonised, integrated, and reliable pan-European source of information on all paediatric medicines registered under the European Medicines Agency (EMA) Centralised Procedure.
Focusing on issues related to the use, re-use and sharing of personal data, the challenges linked to the development and the implementation of a Code of Conduct relevant for research especially in a paediatric perspective were analysed by a new TEDDY member, expert in data protection.
The role and future activities of TEDDY within the European Joint Programme on rare Diseases (EJP RD) were presented focusing on training activities for rare and paediatric expert patients that TEDDY are developing.
The meeting was concluded with the presentation of the TEDDY KIDS serious game “My Clinical Trial Center” shown by the young members of KIDS Albania and KIDS Bari.
The meeting registration and presentations are available at the dedicated webpage.