RECAP preterm contains 11 work packages (WPs).
Ensure RECAP preterm achieves its objectives and delivers in time, budget and quality its milestones and deliverables by helping the consortium abide by the regulations and contractual obligations. Manage the project’s finances and report them properly to the European Commission. Establish a communication infrastructure which enables the partners to stay connected and preserve their rights regarding intellectual property.
Ethics, law and research governance
Establish a governance model to share and integrate data from a large number of different cohorts on children and adults born very preterm and to perform research on the combined data in line with the ethical and legal requirements of data management.
Data mapping and data harmonization
Facilitate pooling of individual patient data from very preterm birth cohort studies to increase statistical power and enhance international comparison by providing a framework for standardising existing data and informing on-going and future data collection.
Fulfill the IT requirements of RECAP preterm, according to the data governance policies established by the consortium and to contribute to the harmonization of concepts and practices in the collection of data about preterm birth cohorts across Europe.
Statistical methods for integrated individual patient data (IPD)
Develop, test, apply and implement appropriate statistical methods for integrating individual patient data (IPD).
Improving data collection, follow-up, and participant involvement
Develop more effective approaches to augment participation in longitudinal cohort studies and to assure the quality of information collected.
Hypothesis-driven research agenda for child VPT cohorts
Define a consensual research agenda to promote hypothesis-driven research using combined data from multiple cohorts and identify research priorities and methods that will get the most value from the temporal and geographical diversity of the cohorts and the large sample sizes enabled by pooling individual-level data. Implement demonstration research studies with the members of participating cohorts to produce new knowledge about very preterm birth.
Use of national registry infrastructures to study VPT outcomes
Make data from population-based registries accessible to data pooling through the comprehensive integration strategy using new data pooling technologies. Use the pooled registry data together with data from the clinical cohorts to study outcomes of VPT/VLBW birth from infancy to adulthood at a population level, encompassing developmental, physical and mental health outcomes, societal outcomes such as education, occupation, (un)employment, reproduction and economic impact from birth to adult life to identify resilience factors and to formulate new research agenda.
Risk, protection and resilience in adults born preterm
Identify universal protective factors that influence health and economics outcomes across European population cohorts of adults born VPT/VLBW. These findings will help to determine why substantial numbers of VPT/VLBW born children beat the odds and develop disease free and have adaptive lives after neonatal risk exposure while others do not.
Identify whether outcomes have changed across recent decades in relation to changes in neonatal and social care.
Dissemination, Translation and Sustainability
Increase the visibility and health and societal impact of RECAP preterm by reaching out to the scientific community, clinicians, health care professionals, patient organisations, the general public, policy makers, and other potential stakeholders at the local, national and EU level.
Set out the ethics requirements for RECAP preterm and ensure the project complies with them.