The data we have: Pregnancy and birth related data collection in Australia, Canada, Europe and the USA- A web-based survey of practice

Abstract

Objective To determine the feasibility of combining routinely recorded perinatal data from several databases in high-income countries to assess the risk of recurrent stillbirth. Methods Web-based questionnaire survey with reminder emails and searching of relevant country websites. Results 120 countries/regions in Canada, Europe and the USA were invited to participate and 83 (69%) responded. Of those one had no data, and two did not wish to take part. The remaining 80 were sent the questionnaire and 63 (53%) were completed. Twenty-seven countries/regions reported that they collect information on all perinatal events (including early pregnancy loss), 34 on live births and stillbirths and two only live births (stillbirths recorded in a separate database). Most countries (53/63) can link two or more pregnancies occurring in the same woman. Data and information extracted from the Australian and New Zealand Government websites showed that information on all perinatal events is collected nationally in New Zealand and in 5/8 regions in Australia. Both Australia and New Zealand can link two or more pregnancies occurring in the same woman. Maternal age and caffeine consumption were the most and least consistently collected demographic indicators respectively. Diabetes mellitus and mental health problems, birthweight and obstetric cholestasis the most and least consistently collected for medical conditions and pregnancy condition/complications. Procedures for gaining access to data vary between countries. Conclusion This study demonstrates that it is possible to link pregnancies in the same woman to assess the risk of recurrent stillbirth using routinely collected perinatal data in all states/territories in Australia, 7/8 responding provinces/territories in Canada, 21/27 responding countries/regions in Europe, New Zealand and 26/28 responding states in the USA. The scope of the databases and quality and extent of data collected (thus their potential use) varied, as did procedures for accessing their data.