TEDDY Network believes that children and families deserve to understand the research they are part of, and contribute to its design. Through co-created games, videos, and study materials, these tools are designed to inform, engage, and empower young patients making paediatric clinical research accessible, transparent, and trustworthy for every age.

To reach children and adolescents more broadly, TEDDY Network contributed to educational videos explaining what clinical trials are and why they matter.

In 2012, the Paediatric Committee (PDCO) published a Concept Paper on the Involvement of Children and Young People in Clinical Activities following a comprehensive consultation, highlighting the importance of prioritising the best interests of children and young people in clinical research and clinical activities.

The TEDDY Network has contributed educational video resources, including “A Spoonful of Info Helps the Medicine Go Down” and two videos on clinical trials: “The Mystery of the Clinical Trial”, designed for children, and “What is a Clinical Trial”, designed for adolescents.

These videos are available below.

As part of its commitment to empowering children and families in clinical research, TEDDY Network contributed to the DEEP (DEferiprone Evaluation in Paediatrics, 2011-2016) study by developing age-appropriate informative materials to help young patients and their families understand the medicine, the study, and their role in it.

Coordinated by CVBF and launched under the EU’s 7th Framework Programme (FP7), DEEP was a 6-year European project, comprising 23 recruiting centres in European and non-European countries, scientific partners from several European countries and a pharmaceutical group based in Canada. The DEEP Project has been developed with the specific intent to integrate the existing information on deferiprone use in paediatric patients, thus covering the lack of information and providing a valid support to the use of the drug in this class of age. The aim of DEEP is to provide data on deferiprone pharmacokinetics in younger children, to evaluate the safety of deferiprone in the clinical setting through a long-term observational study and to generate new comparative efficacy/safety data to be used to grant a Marketing Authorisation (MA) of a new liquid formulation of the drug, specifically developed for children use.

The materials developed by TEDDY were designed to support children and their families in understanding key concepts related to medicines and their use in clinical studies, thereby facilitating comprehension and empowering informed participation.

The materials are presented below.

Booklet 11 to 17

Assent form 11 to 17

TEDDY Network co-created an interactive digital game, My Clinical Trial Center (My CTC) involving young members of the TEDDY KIDS  groups from  KIDS Bari and KIDS Albania. The game aims to explain to children in a fun way what clinical trials are, how they work and why they are so important to developing drugs suitable for children.

The game is extremely informative, as game-players will learn about clinical research, study protocol, informed consent and assent in children, phases and procedures of clinical trials, data collection, monitoring and pharmacovigilance. My CTC has received the international Children’s Advisory Network (iCAN)  seal of excellence and has been officially presented during the iCAN Summit held on July 12th – 16th 2021.

Beyond trials, the TEDDY Network also addresses children’s broader right to have a voice  on matters regarding their health.

The video “Have Your Say” promotes the right of children and adolescents to be heard and actively involved in decisions about research and health, highlighting their voices through informational tools co-created by TEDDY Network with children and young patients.

The video was produced within the framework of the Council of Europe Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020–2025), under the Steering Committee for Human Rights in the fields of Biomedicine and Health (CDBIO).

The Council of Europe, in collaboration with TEDDY Network, has developed a child-friendly guideline entitled Guide to the Participation of Children in Decision-Making Processes Regarding Their Health through a participatory methodology involving children and adolescents from across the EU, including members of the TEDDY KIDS Network from KIDS Bari and KIDS Albania.

The video is presented below.