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 - European Paediatric Medicines Needs
The European Paediatric Medicines Needs WG aims to implement, manage and disseminate results from the European Paediatric Medicines Database (EPMD) established in 2007 allowing monitoring of the status of the art of paediatric medicines approved by the EMA since 1995. The EPMD may be publicly consulted, and periodic public reports are being released regularly. Providing full access to the comprehensive data contained in the European Paediatric Medicine Database enables informed decision-making and fosters advanced research to address the specific needs and challenges of paediatric healthcare.
Here’s a list of the EPMD reports.
WG - Off label uses mitigation
The WG on Off label uses mitigation aims at developing actions to properly address the theme of paediatric off-label medicines use at European level, starting from the existing or under development best practices and tools developed by TEDDY and other research groups in Europe in support of a safer use of medicines for children. This is done mainly through collaborative research projects, training and advocacy activities, and scientific publications.
WG - Paediatric Therapy Development
A formal proposal has been submitted to establish a dedicated working group focused on the development of innovative paediatric therapies. This initiative represents a significant advancement in promoting structured collaboration among experts in the field. It aims to facilitate the identification and analysis of emerging therapeutic approaches in paediatric healthcare and to make a tangible contribution toward addressing existing gaps in a critically important, yet often underrepresented and insufficiently explored, area of human development research.
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 - Paediatric Research Methodologies
The WG on Paediatric Research Methodologies is in charge of supporting the TEDDY’s membership in several EU and international initiatives, such as the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA), the Accelerating Clinical Trials in the European Union (ACT EU) and the SPIRIT|CONSORT initiative. The goal of this WG is to facilitate the adoption of innovative designs and advanced methodologies in paediatric research, promoting a more efficient and innovative approach to paediatric clinical trials.
WG - Health Data & Real-World Evidence
The Health Data & Real-World Evidence WG aims to provide contribution to the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP), in which TEDDY is represented and focused on the paediatric aspects. Members of the Health Data & Real-World Evidence WG are actively involved in the activities of the dedicated ENCePP Working Groups and Special Interest Groups, based on their interests.
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).
With the objective of o promoting children empowerment and engagement in research activities relevant to children, TEDDY has established several Young Person Advisory Groups (YPAGs) since 2017, such as KIDS Bari and KIDS Albania). These groups are also members of the International Children’s Advisory Network (iCAN). YPAG’s members seek to enhance awareness among key stakeholders including authorities, general public, health professionals and sponsors about the persistent unmet therapeutic needs of children to prioritise children’s well-being and safety.
As part of ongoing efforts to strengthen its international presence, TEDDY has founded the TEDDY KIDS Network, which is an inclusive community of individual YPAGs across Europe dedicated to advocating for the improvement of paediatric health. This Network warmly welcomes any existing or new YPAGs that wish to join in shaping the future of paediatric health by dedicating continuous efforts in:
- Participating to surveys and other initiatives on topics of paediatric interest aimed to stimulate debate among stakeholders;
- Producing videos, leaflets, empowering tools with and for children;
- Providing opinion on documents related to research involving children, proposed by researchers and sponsors or by Public Authorities (EMA, CoE, EU Commission).
WG - Children empowerment and engagement
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.
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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.