Key Milestones &
Deliverables

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The IMPROVE PRETERM project runs from January 2025 to December 2028. Over these four years, we will deliver 44 concrete outputs (called deliverables) and reach 31 milestones that mark our progress. These outputs will help families, healthcare professionals, and policymakers better support children and adults born very preterm.

Timeline of the Project

2025 – Laying the Foundation

  • Launch of the project and setup of the Parent and Patient Advisory Board (PPAB) and Project Expert Group (PEG).
  • Governance and ethics structures in place.
  • First studies prepared on treatments, follow-up, and vaccine strategies.

2026 – Tools and Frameworks in Action

  • Development of the PARCA-5/7 prototype questionnaire, a new parent-reported tool to assess child development at ages 5 to 7.
  • First study protocols for Comparative Effectiveness Research (CER) use cases published.
  • Early results from Nordic registers and neonatal networks start to flow in.

2027 – Building Evidence and Resources

  • Publication of the CER Lifecourse Framework, including outcome standards, methodological guidelines, and a training course for researchers.
  • Testing and validation of the PARCA-5/7 tool across Europe.
  • Major release of the RECAP Preterm platform, now expanded with data from birth registers, neonatal networks, and clinical trials.
  • Deployment of open-source software tools for secure data analysis, developed by Epigeny and INESC TEC, allowing researchers to run advanced studies while protecting privacy.

2028 – Delivering Impact

  • Final PARCA-5/7 tool standardized and available in multiple languages.
  • Publication of Evidence Briefs for policymakers and healthcare providers on corticosteroid treatments, follow-up programs, and vaccine strategies.
  • Completion of the Sustainability Plan for the RECAP Preterm platform, ensuring its long-term use beyond the project.
  • Final communication and policy recommendations shared with families, clinicians, and decision-makers across Europe.

Highlights of What We Will Deliver

Stylized family icon representing neonatal and family-centered care within the IMPROVE PRETERM project.

By the end of IMPROVE PRETERM, you can expect:

  • A CER Lifecourse Framework to guide future research.
  • The validated PARCA-5/7 follow-up tool for families and clinicians.
  • Evidence Briefs with clear recommendations for policy and practice.
  • An expanded RECAP Preterm platform with new datasets from trials, registers, and neonatal networks.
  • Open-source, privacy-preserving data analysis software from Epigeny, making research faster, safer, and more collaborative.
  • A sustainability plan to keep the platform alive and useful well beyond 2028.
  • Continued patient and family involvement through the PPAB and PEG.

In Summary

The milestones of IMPROVE PRETERM are more than checkboxes on a calendar – they are stepping stones toward real change. Each deliverable brings us closer to a future where children born very preterm not only survive but thrive.