The NURTuRE (National Unified Renal Translational Research Enterprise) team wanted to make their kidney disease cohort data more useful for research, but they needed a secure and efficient way to link consented participant data with routinely collected NHS records from across the UK. The aim was to help approved researchers answer important questions about kidney disease while protecting participant privacy and reducing the time, cost, and complexity of data linkage.
The BHF Data Science Centre team supported NURTuRE through UK CliC (UK Clinical Cohorts), a trusted research environment hosted within SAIL Databank that brings cohort data and NHS records together in a secure setting. The team helped streamline the application and linkage processes, assessed how participant consent supported linkage and onward sharing, and provided health data science expertise to curate the data and develop a dashboard so researchers could understand what was available before applying.
As a result, NURTuRE’s kidney cohort data can be securely enriched with routinely collected NHS data. Now researchers can plan projects more easily, use the dashboard to check if their studies are viable, and access anonymised linked data in one place rather than relying on multiple separate data flows and systems.
For cohort owners, this example shows how UK CliC can reduce duplication and make consented cohort data work harder for the research community. For researchers, it provides a clearer route to high-quality linked data. For patients and the public, it demonstrates how trusted use of health data can help accelerate discoveries that can improve understanding, treatment and care for people living with kidney disease.
Gaia Cantelli, Director of Data Science and NURTuRE, Kidney Research UK, said:
“Kidney Research UK and NURTuRE Biobank are excited to be one of the first users of the UK CliC TRE. Having the Chronic Kidney Disease (CKD) and Idiopathic Nephrotic Syndrome (INS) cohort data linked to health records, and having a trustworthy mechanism to share this enhanced data with the kidney research community, will drive breakthroughs in the way we treat, manage, and prevent kidney disease.
We look forward to seeing the first outputs from the researchers accessing the data later in the year”
Explore how UK CliC is making it easier, faster, and more secure to link consented clinical cohort data with routine health records.