Relation to
RECAP PRETERM
The IMPROVE PRETERM project is not starting from scratch. It builds directly on the work of an earlier European project called RECAP PRETERM (2017–2021), which created the first large-scale platform for research on children and adults born very preterm.
RECAP PRETERM brought together data from 23 European cohorts and national registers in the Nordic countries, creating a secure, federated platform for researchers. It gave Europe a unique resource for studying the health and development of babies born too soon.
What RECAP PRETERM ACHIEVED
- Created a federated data system where partners can securely share and analyze information.
- Connected data from tens of thousands of very preterm children and adults across Europe.
- Provided the technical foundation for large, cross-country studies.
This was a major step forward – but more work was needed.
What IMPROVE PRETERM Adds
IMPROVE PRETERM takes the foundation of RECAP and brings it to the next level:
- New data sources: Adding information from birth registers, neonatal networks, and clinical trials (for example, the German and Swiss Neonatal Networks).
- New research tools: Developing open-source software for secure, privacy-friendly data analysis, so more researchers can use the platform safely.
- New follow-up instrument: Creating the PARCA-5/7 questionnaire, a simple parent-reported tool to assess child development at ages 5 to 7.
- Sustainability plan: Ensuring the platform remains active, useful, and open to future researchers long after the project ends.
Why This Matters
By building on RECAP PRETERM, the IMPROVE PRETERM project saves time, avoids duplication, and makes the most of existing resources. At the same time, it adds the data, tools, and sustainability measures needed to turn the platform into a long-term resource for families, doctors, and researchers everywhere.
Together, RECAP and IMPROVE PRETERM create the strongest research base in Europe for improving lifelong outcomes of babies born very preterm.