Wessex Secure Data Environment (SDE) helped global life science company GSK, working in partnership with Health Data Research UK (HDR UK), understand how England’s SDE Network could support complex, real-world research studies in neurodegeneration by providing rapid, candid and evidence-based feasibility insight.
Building the route to national-scale research
GSK and HDR UK needed to understand the data landscape and assess whether England’s SDE Network was fit for purpose to support large, complex, real-world evidence studies of progressive neurodegenerative diseases such as dementia.
Working through Connect-D, Wessex SDE coordinated an initial national feasibility assessment across ten Secure Data Environments. In eight weeks, the team assessed population coverage, linked data availability, governance readiness, operational capability, and likely delivery timelines.
The assessment showed that the SDE Network has the foundations and operating model needed to support population-scale, real-world evidence studies into complex neurodegenerative diseases, such as dementia and Alzheimer’s disease, that have a significant public health impact as the leading causes of death in England and Wales.
It mapped the practical steps, timelines and data onboarding needed to conduct a feasibility assessment of whether the data are fit for purpose. By identifying the remaining barriers and quantifying the cohort gap, Wessex SDE created an evidence-based roadmap for national-scale delivery.
Carol Koro, VP and Head, Global Epidemiology and Real-World Evidence at GSK, said:
“For large-scale studies with significant public health impact, rapidly understanding what can be delivered, by when, and under which governance requirements is critical for planning. The assessment led by Wessex SDE, with HDR UK and SDE partners, provided a timely, structured view of data availability, linkage, secure access, and delivery readiness across England’s SDE Network. This clarity is essential for making informed decisions about future research.”
Rhoswyn Walker, Chief of Staff and Director of Strategy at HDR UK, said:
“Working in partnership, HDR UK, GSK and Wessex SDE delivered the coordinated national response this kind of complex research question requires. By bringing together multiple SDEs and producing a coordinated national assessment of readiness, the team helped us understand current capability, future dependencies and what is needed to support population-scale research through the SDE Network.”
Heather Case, Deputy Director Data & Intelligence, NHS BSW, Dorset and Somerset ICB, said:
“Dementia affects every community, so every part of the NHS has a stake in helping research move faster where it can be done safely. This work shows how local NHS data can support national research responsibly, creating opportunities for research that benefits patients, creating routes into funded research and keeping local stewardship, governance and public benefit at the centre.”
John Stainton OBE, Wessex SDE public member, said:
“Every family touched by dementia wants better answers and especially the hope for the future those better answers provide. This work is encouraging because it shows the NHS testing whether complex research can be done safely, transparently and in the public interest before conclusions are drawn.”
Further information
- Dementia and Alzheimer’s disease are the leading cause of death in England and Wales. The World Health Organisation (WHO) now reports that more than 57 million people worldwide live with dementia.
- The wider collaboration between GSK, Health Data Research UK (HDR UK) and the UK Dementia Research Institute (UK DRI) was announced publicly in March 2025. The collaboration aims to advance understanding of neurodegeneration with a first-of-its-kind dementia study.
- Wessex SDE coordinated the assessment through Connect-D, an NHS England supported programme building a national-scale dementia data registry and improving access to Secure Data Environments.
- The project required access to a large cohort drawn from a UK population using linked primary care, secondary care, medication and mortality records.
- The assessment engaged ten Secure Data Environments across England, with five providing detailed readiness assessments covering population coverage, data availability, linkage capability, governance, operational readiness and delivery timescales.
- The assessment was completed in approximately eight weeks, providing GSK, HDR UK and participating Secure Data Environments with a single national view of current capability, readiness and future delivery requirements.
- The assessment concluded that the SDE Network has an emerging operating model capable of supporting national, multi-SDE, real-world evidence research, while identifying the remaining data onboarding and participation required to achieve the target cohort size.
- The work produced an evidence-based roadmap for future delivery and established a repeatable approach for assessing national research feasibility across multiple Secure Data Environments.
- Any future study would use pseudonymised NHS electronic health records accessed by approved researchers within trusted and secure research environments, subject to the relevant research, information governance, data controller and data access approvals.