TEDDY Network Joins Discussion on Young Patient Perspectives in Paediatric Research
TEDDY is pleased to share an upcoming joint educational webinar organised by the European Paediatric Transnational Research Infrastructure (EPTRI) and European Institute for Innovation through Health Data (i~HD), focusing on the transformative role of real-world health data in paediatric clinical research.
The upcoming webinar is titled “Unlocking the Potential of Real-World Health Data for Paediatric Clinical Research” and will be held on 26 May 2026, from 15:00 to 16:30 CEST, online via Microsoft Teams.
This webinar will examine how real-world health data, particularly information collected through Electronic Health Records (EHRs), can support more efficient and patient-centred paediatric clinical trials.
Paediatric and rare disease studies frequently encounter major barriers, including small patient populations, difficult recruitment pathways, and significant logistical burdens for families and healthcare professionals. The session will explore practical approaches to overcoming these challenges through the responsible secondary use of existing health data.
Confirmed Speakers
The programme features recognised experts from across the paediatric research and health data ecosystem:
- Marek Migdał – European Paediatric Transnational Research Infrastructure (EPTRI) and Children’s Memorial Health Institute (CMHI)
- Dipak Kalra – The European Institute for Innovation through Health Data (i~HD)
- Mats Sundgren – The European Institute for Innovation through Health Data (i~HD)
- Peter Casteleyn – The European Institute for Innovation through Health Data (i~HD)
Patient and Youth Perspectives
A key feature of the webinar will be the contribution of young patient advocates connected to TEDDY initiatives:
- Valentina Jalby – Young patient advocate actively involved in the TEDDY KIDS Network, as well as a member of the INVENTS Patient Expert Group (PEG), established by TEDDY Network to strengthen patient involvement in paediatric medicines research.
- Karol Slowik – member of the TEDDY KIDS Network through POLPEDNET KIDS Warsaw (Poland) and member of the Patient Expert Committee (PEC) of the OrphaDev4Kids Project.
Both speakers will share valuable first-hand perspectives on the experience of children, adolescents, and families participating in paediatric research.
Key Discussion Topics
Participants will explore:
- Experiences of children and families involved in clinical trials
- Structural barriers affecting trial feasibility and recruitment
- Opportunities for using real-world data across the clinical trial lifecycle
- The role of interoperability, governance, and the European Health Data Space (EHDS)
- Practical actions stakeholders can take to advance data-driven paediatric research
The webinar is designed for clinicians, researchers, patient organisations, policymakers, and data specialists. Interactive discussion will allow participants to actively contribute their perspectives.
For registration and participation, please visit: Register Here
Through this collaboration, TEDDY continues to actively engage its network in strengthening paediatric clinical research by promoting the structured use of real-world health data and ensuring that young patient voices are systematically integrated into research discussions. This contribution reflects TEDDY’s ongoing role in supporting more relevant, feasible, and patient-informed approaches within paediatric studies.