Cohort Profile: Born in Wales - a birth cohort with maternity, parental, and child data linkage for life course research in Wales, UK

Abstract

AbstractPurposeParental and neonatal child health and education records have been linked to provide an entire country birth cohort, to examine what will improve the health and wellbeing of families growing up in Wales. Established in 2020, Born in Wales utilised data linkage techniques to connect information from the 2011 census with health, social care, and education routine data in the Secure Anonymised Information Linkage (SAIL) Databank. We present the descriptive data available in the linked database, emphasise the robust data security and governance frameworks, and present the future expansion plans for the database beyond its initial development stage.ParticipantsDescriptive information from 2011 to 2023 has been gathered from SAIL. This comprehensive dataset comprises over 400,000 child electronic records. To augment this data, the Born in Wales and primary school surveys have contributed quantitative and qualitative responses.Findings to dateThe cohort comprises all children born in Wales since 2011, with follow-up conducted until they finish primary school at age 11. 2,500 parents and 30,000 primary school children have been recruited for enhanced data collection and linkage to the data spine. The child cohort is 51%: 49% female: male, and 6% are from ethnic minority backgrounds. When considering age distribution, 26.8% of children are under the age of 5, while 63.2% fall within the age range of 5-11.Future plansBorn in Wales will expand by 30,000 new births annually in Wales, while including follow-up data of children and parents already in the database. Supplementary datasets complement the existing linkage, including primary care, hospital data, educational attainment and social care. Future research includes exploring the long-term implications of COVID-19 on child health and development, the influence of environmental factors including climate change on health and examining the impact of parental work environment on child health and development.Strengths and limitations of this studyBorn in Wales has established a comprehensive, Wales-wide population-based database which consolidates clinical data from maternity, neonatal, child health, and education records.This national-scale database is supplemented by quantitative and qualitative results from surveys conducted by Born in Wales, providing rich insights into details that cannot be obtained through routinely collected data.The existence of this database enables further data linkage, facilitating life course research on the health and wellbeing of the Wales population.Missing data or errors in routine and administrative data may be constraint.A potential restriction of Born in Wales is the loss of data pertaining to individuals who relocate outside of Wales during pregnancy or after the child’s birth.