Areas of interest
Helping Children Understand Healthcare:
TEDDY Network’s Commitment to Patient Empowerment
Several Working Groups (WGs) have been created to plan, organise, and coordinate the activities that fall within TEDDY Objectives. They are grouped in four areas of Interest.
Paediatric medicines
Promoting equal access of children to paediatric medicines and other products
When focusing on paediatric populations, a discrepancy exists between the medicines available for children and those for adults. Notably, many paediatric medications have labels that are not suitable for children for different age groups. In this situation, off-label use often represents the only treatment option for paediatric patients, and, in the lack of established risk-benefit criteria, prescribers have taken different approaches, also following non-harmonised national rules. TEDDY has set-up:
WG 1 - EPMD WG
WG 2 - WG on Off label uses mitigation
WG 2 – The WG on Off label uses 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 in support of a safer use of medicines for children.
Research methodologies
Promoting paediatric research having the highest ethical and methodological standards for the advancement of novel therapies addressing unmet medical needs.
In this area the following WGs have been set up:
WG 3 - WG on Paediatric Research Methodologies
WG 4 - WG on Pharmacoepidemiology and Pharmacovigilance
WG 4 – An ad hoc WG, WG on Pharmacoepidemiology and Pharmacovigilance has been set-up in order to provide contribution to the (ENCePP) in which TEDDY is responsible for the paediatric aspects.
Children Engagement
Engaging children and young patients in decisions related to their health and in the research journey
The active participation of children in decision-making processes, according to their age and maturity, is crucial in routine clinical practice, and in the development of new medicines, devices and therapies. Moreover, empowering children and young individuals by incorporating their perspectives in health-related decision-making is a fundamental right (art.24 of the Charter of Fundamental Rights of the European Union – 2000/C 364/01).
WG 5 - WG on Children empowerment and engagement
WG 5 – The WG on Children empowerment and engagement is specifically involved in supporting educational initiatives focused on children and young patients to give them deep knowledge and expertise on how to interact in decision-making processes regarding their health (such as current therapies or experimental procedures).
This WG oversees supporting the TEDDY KIDS Network during the creation of new KIDS groups by managing scheduled activities in projects and other initiatives involving children as well as facilitating the youth participation in the yearly iCAN summits. The WG also supports KIDS in activities external to their own originating YPAG, and elects their representative in the TEDDY’s Board of Directors.
Networking
Ensuring active commitment of different stakeholders to paediatric research and paediatric research projects involvement
TEDDY is a pioneering European network in paediatric research and in making connections with many other valuable organisations around the world. TEDDY has been already involved in several European Projects that seek to promote the advancement of paediatric research and the implementation of new methodologies of interest for children. The network’s primary resources are the large scientific community represented within TEDDY and indeed, TEDDY relies on international cooperation to constantly develop new projects, which are the primary source of funding and sustainability for the network.