Data use registers are a key component of improving transparency and trust in the use of health data for research - they allow patients and members of the public to see and feel confident in how patient data is being requested.
The data use register for the UK Renal Registry is publicly available to view on the HDR Innovation Gateway.
To show that only qualified people in secure settings can access our data, and for purposes that benefit the public, the content and structure of individual data uses follows Five Safes Framework. The Five Safes framework is a set of principles which enable data services to provide safe research access to data. The framework originated from the ONS and was developed by them and other data providers in the 2010s. The framework has become best practice in data protection whilst fulfilling the demands of open science and transparency.
The register implements a national standard for data use registers, developed after wide consultation with data custodians and the public:
Macaulay, Y., UK Health Data Research Alliance, Pan-UK Data Governance Steering Group, HDR UK Public Advisory Board, & Five Safes Action Force. (2023). Pan-UK Data Governance Steering Group Data Access Transparency Standards. Zenodo. https://doi.org/10.5281/zenodo.8262453
Incidence and outcomes of in-hospital cardiac arrests in the United Kingdom kidney replacement therapy population
Defining strategies to address the supply and demand of deceased donor kidney transplantation with optimised equity of access
Quantifying the burden of ESRD from Glomerulonephritis in the United Kingdom – The 3GN Registry based study
Pragmatic randomised trial of High Or Standard PHosphAte Targets in End-stage kidney disease (PHOSPHATE)
The association of duration of AKI with subsequent need of chronic dialysis or death
EMPA-KIDNEY - the study of heart and kidney protection with empagliflozin
Long-term renal outcomes in patients who received extracorporeal membrane oxygenation or RRT at Guy's & St Thomas' Hospital
The use of cancer immunotherapy in kidney transplant recipients: how often and at what risk?
STandard versus Accelerated initiation of Renal Replacement Therapy in Acute Kidney Injury (STARRT-AKI): A Multi-Centre, Randomized, Controlled Trial
Consistency and implementation of NHS England AKI patient safety alert algorithm in embedded laboratories
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