New project explores data sharing between Children of the 90s and the South West SDE
A new project will explore how data from Children of the 90s can be made available through the South West Secure Data Environment (SDE). The project aims to establish a framework for trusted data sharing between SDEs and long-term research projects.
Children of the 90s (also known as the Avon Longitudinal Study of Parents and Children or ALSPAC) has been collecting detailed health and lifestyle information from around 30,000 people for more than 30 years. This makes it a very valuable resource for health researchers.
Children of the 90s links its data to NHS and other records using its own secure systems. However, there is now a national move towards bringing health and research data together in platforms like the South West SDE.
The project, led by the National Institute for Health and Care Research Bristol Biomedical Research Centre (NIHR Bristol BRC), will explore how Children of the 90s data could safely and effectively be shared within the South West SDE. Doing this could make it easier for researchers to carry out clinical and health-service research, but we need to understand the implications first.
Children of the 90s has very strict data governance processes, strong participant trust, and several existing accreditations. Any new approach needs to protect this.
To work through these questions, the team will use an example project on eating disorders, an area where Children of the 90s has rich self-reported data but limited clinical records. This will help us understand what technical systems, approvals, staffing, and researcher support would be needed.
The project will:
- Identify the technical and governance requirements
- Design a possible data pipeline and outline the steps for transferring data securely
- Understand what researchers will need, such as software, training or specialist data types
- Produce clear operating procedures so the Children of the 90s team can approve and support future South West SDE projects quickly
- Estimate the staffing and cost requirements for this new way of working
The team will produce a set of practical tools, such as procedures, guidance documents and costing models, that allow Children of the 90s to work smoothly with the South West SDE and other similar platforms. The team will also produce a technical report to help other studies understand the process.
Professor Kate Northstone, Executive Director at Children of the 90s, University of Bristol, said:
“This is an exciting project which could transform the scale of research that uses Children of the 90s data. We hope that by exploring the best ways of doing this with a test project, we can pave the way for other longitudinal studies to offer their data via SDEs.”
Dr Rachel Denholm, Research Lead at the South West SDE and research lead at the Bristol BRC, said:
“Children of the 90s is a world-leading birth cohort, with more than 30 years of incredibly rich data. Making their data available through the South West SDE will open up so many potential projects. Getting the governance and processes right is central to making this happen.”