ALSPAC: Avon Longitudinal Study of Parents and Children

What is ALSPAC?

ALSPAC – The Avon Longitudinal Study of Parents and Children (also known as Children of the 90s) is a world-leading birth cohort study that collects multi-generational data from participants through biological sampling, clinical measures, questionnaires and record linkage. ALSPAC receives core funding from the UK Medical Research Council, the Wellcome Trust and the University of Bristol, where ALSPAC is also based.

Project background.

Between April 1991 and December 1992, ALSPAC recruited more than 14,000 pregnant women into the study, some of whom had two pregnancies or multiple births during the recruitment period. The children arising from the pregnancy, and their partners have been followed up intensively for nearly three decades.

ALSPAC is the most detailed study of its kind in the world and provides the international research community with a rich resource for the study of the environmental and genetic factors that affect a person’s health and development. Their research informs policy and practice that will provide a better life for future generations. Researchers can submit project proposals on the ALSPAC website. 

Over 2000 research papers have been published using ALSPAC’s wealth of data, addressing many important health questions. During the Coronavirus pandemic, ALSPACs well-established cohort of participants have also been making a very valuable contribution to COVID-19 research.

We asked the people behind ALSPAC to tell us more about how SeRP has been used to support the study…

Andy Boyd, data linkage expert in longitudinal cohort studies, explained,

“ALSPAC need to maintain participant trust and confidentiality whilst enabling efficient access to the data. Increasingly, the way to do this is through ‘reading library’ approaches where we have full control of our data across the project lifecycle. SeRP provides an off-the-shelf infrastructure for this – which is fully compatible with our ISO27001 information security system and satisfies the requirements of our key stakeholders, such as the NHS and Health Research Authority.”

Kate Northstone, Executive Director (Data) of ALSPAC, commented,

“SeRP provides an alternative solution to ALSPAC collaborators who, for whatever reason, are unable to sign our Institutional level data access agreement (DAA). The DAA is a requirement for data sharing as part of our commitment to ISO27001, however, SeRP provides the secure environment through which ALSPAC collaborators can access our data, even without linkage to administrative records.”

Data Manager, Richard Thomas, who writes programs to harmonise, manipulate and provide analytical insight into ALSPAC data, said,

“The dedicated SeRP for ALSPAC, means our team is able to take control of our data access model. This has streamlined the linkage of ALSPAC-collected and routinely collected administrative records such as education and health. The SeRP also enables data to be securely and conveniently shared with our researcher collaborators within the environment, allowing important research questions to be addressed on pressing health topics from Schizophrenia to Asthma.”
“This flexibility has also allowed us to respond quickly to emerging health and lifestyle impact factors. In the context of the Coronavirus outbreak, we’ve been able to respond quickly by asking our participants to help us understand more about COVID-19 by completing questionnaires.”

Dr Luke Daines, a GP and researcher based at The University of Edinburgh added,

“Using SeRP allowed me to combine data from the ALSPAC study with linked primary care records, enabling me to develop a prediction model to support health professionals when making a diagnosis of asthma in primary care”