During the last GA, several 2023, several Working Groups (WGs) and subgroups have been created to plan, organise, and coordinate the activities that fall within TEDDY Objectives. Each TEDDY participant has selected one or more groups to which they are willing to participate by filling in an expression of interest. It’s still possible to participate in one or more groups using the link to the survey.
Up today, the following groups have had their KoM and are launching several initiatives:
Working Group on Children Engagement and Advocacy. This WG is particularly involved in preparing the iCAN 2004 summit, which will be held in Bari from July 15 to 19 (see details in the box below), and in setting up new KIDS groups; Several Kids are ongoing, i.e. in Greece, Polonia, Kosovo.
Working Group on Off label use mitigation. It is aimed to prepare a plan of action to reduce the off-label use of drugs in children, starting from the existing or under development good practices, SOPs and tools developed by TEDDY and other research groups in Europe;
Working Group on Paediatric Research Methodology. This WG is divided into several subgroups that are working on strict cooperation with relevant European initiatives such as 1-the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) a Network of several Paediatric Research Network including TEDDY!; 2- the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP), of which TEDDY is a permanentanent member; 3-CONSORT -SPIRIT that help researchers to report the results of the studies in an understandable way by using standards and measures adapted on children; 4-the ACT-Multistakeholder’s group, where different stakeholders periodically discuss the status of clinical trial methodologies and share their perspectives.
Working Group on Paediatric patients outcome. This WG promotes the use of children’s involvement in collecting their own data during a trial or a clinical observation. This procedure, which is quite common in adults but completely new in children, may facilitate a clearer and timelier conclusion for a clinical study.