RECAP: Research on European Children and Adults born Preterm
The project’s overall aim is to improve the health, development and quality of life of children and adults born very preterm (VPT, < 32 weeks of gestation) or very low birth weight (VLBW, < 1500g) – approximately 50 000 births each year in Europe – by establishing an ICT platform to integrate, harmonise and exploit the wealth of data from 20 European cohorts of VPT/ VLBW children and adults and their families constituted from the early 1980s to the present, together with data from national registries. VPT/VLBW births have higher risks of cerebral palsy, visual and auditory deficits, impaired cognitive ability, psychiatric disorders and social problems than infants born at term and account for more than a third of the health and educational budgets for children. They may also face higher risks of non-communicable disease as they age. There is emerging evidence of reduced mental health, quality of life, partnering, family life and employment chances and wealth in adulthood. The platform will enable stratified sub-group analyses of sociodemographic and clinical characteristics, neonatal complications, and otherwise rare medical conditions that cannot be studied in national population cohorts. The broad temporal, geographic, cultural and health system diversity makes it possible to study the impact of socioeconomic and organisational contexts and determine the generalisability of outcomes for VPT/VLBW populations. The RECAP platform creates a value chain to promote research and innovation using population cohorts, beginning with the integration of VPT/VLBW cohorts to the translation and dissemination of new knowledge. It will be based on a sustainable governance framework, state-of-the art data management and sharing technologies, tools to strengthen research capacity, a hypothesis-driven research agenda and broad stakeholder participation, including researchers, clinicians, educators, policy makers and very preterm children and adults and their families.