Setting up a population-based pregnancy cohort study: Two Australian examples
Population-based pregnancy cohort studies are key to uncovering and explaining biological, psychological and social mechanisms that give rise to all aspects of health and development. While desirable, cohort studies are extremely expensive to set up and manage, and they are fraught with methodological difficulties. In this presentation, the setting up of a pregnancy cohort study will be discussed with reference to the Western Australian Pregnancy Cohort (Raine) Study and the Peel Child Health Study. The Raine Study recruited almost 3000 women at 18 weeks in pregnancy and has followed the children who were born into young adulthood. More recently, the Peel Study has recruited 450 women at 18 weeks in pregnancy and followed the children who were born to their first birthday. Both studies have involved the collection of biological and assessment data, in addition to questionnaire data and both datasets are currently being used to investigate complex causal pathways that involve genes and environment. Specific issues will include: selecting investigators; selecting the study population; obtaining a representative sample; collecting biological, assessment, and questionnaire data; developing a data collection team; developing governance structures; data confidentiality and protection; maximising full participation; minimising loss to follow up; communication strategies; and keeping the study going in the long-term.
Dr. Garth Kendall is a Developmental Epidemiologist. He was the manager of the Western Australian Pregnancy Cohort (Raine) Study at the Telethon Kids Institute in Perth for a period of 10 years. After this, Dr Kendall became an investigator in two Raine Study follow-ups and was responsible, with colleagues, for setting up the Peel Child Health Study. The Raine Study has become one of the most important studies of children’s health and development that is currently being undertaken worldwide. Dr Kendall’s research interests include: child and adolescent development; family psychosocial characteristics and the experience of family life-stress; inequalities in children’s health and development; family-centred care; and family factors in chronic disease self-management.