Objectives & Goals

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The IMPROVE PRETERM project (2025–2028) is dedicated to improving the health, development, and quality of life of children and adults born very preterm (before 32 weeks of pregnancy). Our work is guided by five clear goals that place families, science, and society at the center.

Five Core Goals

1. Partner with Stakeholders

We believe the best research happens when families, healthcare providers, and policymakers work together. IMPROVE PRETERM involves parents, adults born preterm, doctors, nurses, and decision-makers in every step of the project. Their voices shape our research questions, tools, and recommendations, making sure the results truly meet real-world needs.

2. Build a Lifecourse Framework

We are creating a framework for Comparative Effectiveness Research (CER) that looks across the entire life course of very preterm individuals. This includes:

  • agreeing on core outcome sets (which outcomes matter most to families and patients),
  • developing study design and economic guidelines, and
  • identifying where new research methods and resources are needed.

This framework will help future researchers design stronger, more reliable studies.

3. Develop a Parent-Reported Follow-up Tool

Parents know their children best. That’s why IMPROVE PRETERM is creating a new, open-source questionnaire called PARCA-5/7, designed for children aged 5 to 7 years. This easy-to-use tool will allow parents to report on their child’s development, giving doctors and researchers reliable information at a critical stage of learning and growth.

4. Expand the RECAP PRETERM Platform

We are building on the existing RECAP PRETERM data platform, which already brings together valuable information from European cohorts and Nordic registers. IMPROVE PRETERM adds new data sources, including birth registers, neonatal networks, and clinical trials, and develops new tools for secure, privacy-preserving analysis. This creates a rich, long-term resource for studying very preterm health and development.

5. Generate New Knowledge on What Works

By combining large observational studies with trial data, IMPROVE PRETERM is identifying what interventions are most effective for very preterm babies. We focus on three urgent areas of care:

  • corticosteroid treatments before and after birth,
  • follow-up and early intervention programs in childhood, and
  • vaccine strategies, including protection against RSV.

The results will be translated into Evidence Briefs and practical recommendations for doctors, families, and policymakers.

Key Expected Outcomes

At the end of the project, IMPROVE PRETERM will deliver:

  • A CER lifecourse framework with outcome standards, guidelines, and training materials.
  • The validated PARCA-5/7 tool for developmental follow-up at ages 5–7.
  • A sustainable European data platform linking cohorts, registers, and trials in a secure way.
  • Clear, evidence-based guidance for clinical care and health policy.
  • Stronger involvement of families and patients in shaping neonatal and child health research.

In Summary

IMPROVE PRETERM’s goals are simple but powerful: work with families, build better research tools, create new knowledge, and make sure results improve care. By 2028, we expect to give families and healthcare professionals the clarity and resources they need to help children born very preterm not just survive – but thrive.