Why it matters

Although very preterm or very low weight births constitute fewer than 2% of all births across Europe, they account for up to half of perinatal and infant deaths, children with impairments and disabilities and more than a third of the health and educational budgets for children.

Moreover, babies born very preterm or with very low birth weight have higher risks of cerebral palsy, visual and auditory deficits, impaired cognitive ability, psychiatric disorders and social problems than infants born at term. They may also face higher risks of non-communicable disease as they age. There is emerging evidence for increased risks of reduced mental health, quality of life, partnering, family life as well as employment chances and wealth in adulthood.

RECAP preterm aims at finding the root causes of these issues by creating the RECAP preterm Cohort Platform to assemble large amounts of data across European cohorts and beyond that will reflect broad geographic, cultural and health system diversity.

The most obvious benefit from harmonizing and merging these data is the increase in the number of children included in the studies, which is valuable for studying rare exposures and diseases. It also allows for immediate validation and replication of a finding in one country and assessment of cross-country differences. Our new knowledge shall then be converted into policies for more cost-effective care and lower medical, social and educational costs. In the long run, the innovative solutions can serve as a model for developing similar resources for population cohorts outside the field of VPT/VLBW research.