Parallel session 10.00 - 12.00

Registries: Real World Challenges in Real Life Data

Systematic recording of disease outcomes in registries, including the effect of interventions, is crucial, in order to evaluate, improve and accelerate innovations in healthcare, as an important step towards a learning healthcare system.

Working with these real-life data is challenging, however. Collecting the data creates a major administrative burden on healthcare professionals; the multitude of different registries hampers integration; lack of standardization challenges interoperability; and sustainability is often an issue.

Tackling these real-world challenges demands a collaborative effort at the technical, organizational and social level, which we will discuss in this session. This session is co-organized by the working group Real Life Data, from Association Innovative Medicines.


  • Dennis van Veghel, Netherlands Heart Registry
  • Iris Nagtegaal, Radboudumc
  • Jacquelien Noordhoek, Netherlands Cystic Fibrosis Foundation


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