Sustainability of EU Horizon 2020 Research on European Children and Adults born Preterm: Innovative data sharing and extended international collaboration

Sustainability of EU Horizon 2020 Research on European Children and Adults born Preterm: Data sharing and collaborationWith the overarching aim to improve health and quality of life for individuals born preterm, the NTNU Low Birth Weight Life research group has established an acknowledged position and a key role in creating a data platform for joint international and multidisciplinary research.The research group is led by Professor Evensen, Department of Clinical and Molecular Medicine, NTNU, with multidisciplinary collaboration involving other departments at NTNU and St. Olavs Hospital. The team has been partner in a European Horizon 2020 project: Research on European Children and Adults born Preterm (RECAP Preterm), in which we were responsible for data processing and delivery, and authoring publications. RECAP Preterm has established a shared data platform with a central node and local nodes for key partners. The project ended in 2021, but efforts to continue a Post-RECAP consortium are ongoing. Aiming to improve health and quality of life for individuals born preterm with low birth weight, the primary objective of this two-year project is sustained research on European children and adults born preterm using innovative data sharing platforms. This involves three secondary objectives: 1) Establish partnership in Post-RECAP, manage and uphold the local NTNU data node, 2) Author three papers and co-author partner publications on shared RECAP data and 3) Expand the activity in international networks. The measures will strengthen NTNU Low Birth Weight Life as an attractive and active international partner in future research. The project represents novel research involving potential benefits for individuals born with low birth weight, health care providers and society. It complies with strategic priorities of Central Norway Regional Health Authorities, St. Olavs Hospital and NTNU, by involving clinically relevant research that is close to the patients. Furthermore, this multidisciplinary research is of high international significance and quality. Even though the quality of intensive care in neonates has improved during the latest decades and survival of the most immature infants has increased, neonatal and short-term morbidity among preterm born children has remained relatively unchanged. In sum, this reflects an increase in the number of newborns at risk of later adverse outcomes. New knowledge on long-term outcome of preterm birth can improve health and services for these individuals as well as the next generations born with low birth weight. The multidisciplinary design of NTNU Low Birth Weight Life as well as international partner-projects holds the potential to reveal connections between various clinical domains, which can indicate new preventive, supportive and treatment measures for those affected, with the overarching goal to improve health and quality of life. Moreover, results can guide public health policy relevant for both community and specialised health care services. The project will provide important contributions to paediatric and internal medicine, mental health disciplines for children, adolescents and adults, movement sciences and habilitation, and inform educational and societal support systems. Dissemination and implementation of results will ensure evidence-based practice in assessment and treatment within these disciplines, and importantly contribute to identify multidisciplinary needs for low birth weight individuals. The collaboration with other research institutions in Norway and participation in international consortia will further strengthen and extend the quality of research in the NTNU/St. Olavs team. Management of the RECAP Preterm NTNU node involves innovative solutions for data sharing and joint analyses that will promote research using population cohorts far beyond the research at NTNU.