Structure of the
Project
The IMPROVE PRETERM project is a large international collaboration, with partners from 13 countries and many different fields of expertise. To keep everything clear and coordinated, the project is divided into six workstreams and 21 work packages. Each workstream focuses on a key area, and the work packages break down the tasks into manageable steps.
The Six Workstreams
1. Stakeholders & Communication
Families, healthcare professionals, and policymakers are at the heart of this project. This workstream, led by the Global Foundation for the Care of Newborn Infants (GFCNI), ensures patient and family voices are included at every step. It also manages the project’s communication and public outreach.
2. Comparative Effectiveness Research (CER) Use Cases
This workstream looks at real-world healthcare questions. It studies which treatments, follow-up programs, and vaccine strategies work best for very preterm children. These “use cases” provide the evidence families and doctors need to make informed decisions.
3. Lifecourse CER Framework
Here, the focus is on building tools for the future. Partners develop outcome standards, study design guidelines, and economic evaluation methods to make sure research is strong, reliable, and relevant for patients. This framework helps improve research well beyond the life of this project.
4. Novel Follow-Up Tool
Parents need simple, reliable ways to track their child’s development. This workstream develops the PARCA-5/7 questionnaire, a new tool for ages 5 to 7. It will be tested, validated, and made freely available to families and clinicians around the world.
5. Data Platform & Sustainability
All the research relies on high-quality data. This workstream builds on the RECAP Preterm platform, a unique European database that already connects information from preterm cohorts and national registers. IMPROVE PRETERM will add new data from birth registers, neonatal networks, and clinical trials, and develop secure, open-source tools for data analysis. A sustainability plan ensures the platform will continue after the project ends.
6. Management & Ethics
Good science depends on good management and strong ethics. This workstream coordinates the entire project, monitors progress and ensures compliance with European ethical standards. It also manages reporting to the European Commission.
Why This Matters
By organizing the project into workstreams and work packages, IMPROVE PRETERM ensures that each part of the project is well-managed and delivers real impact. Families, scientists, and policymakers can trust that the project’s results are robust, transparent, and practical.