The UK Renal Registry - a research database
Research type
Research Database
IRAS ID
293549
Contact name
Retha Steenkamp
Contact email
Research summary
The UK Renal Registry - a research database
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
21/NE/0045
Date of REC Opinion
22 Apr 2021
REC opinion
Favourable Opinion
Data collection arrangements
Patient identifiable information - such as name, date of birth and NHS number - is collected to allow patients with kidney disease to be followed over time and across different clinical settings. These identifiable data are transferred electronically to the UK Renal Registry (UKRR) in a scrambled format and stored on a highly secure computer meeting national standards. Only 3-4 people at the UKRR have access to this identifiable information. Once the data have been cleaned and duplicate cases linked at the UKRR, all identifiable information is removed and replaced by a scrambled patient identification code prior to the data being used for audit or research. Only the 3-4 previously mentioned people at the UKRR have access to the key to de-scramble the patient identification code and trace the data back to the individual patient, should this become necessary.
Research programme
The UKRR’s research database covers a broad range of patients with kidney disease, including those with: (i) acute kidney injury (AKI), where kidney function decreases suddenly during an illness; (ii) chronic kidney disease (CKD), where kidney function declines gradually and irreversibly from stage 1 to stage 5; and (iii) end-stage kidney disease, where the kidneys fail altogether and dialysis or kidney transplantation are considered. Data items collected include the treatments patients receive and how they fare on those treatments, including blood results, quality of life and survival. Data are also collected that summarise the complexity of the patients being treated, such as age and medical history, and a recent addition was information about patients who test positive for COVID-19. UKRR data are used in a wide range of research studies about people with kidney disease, including epidemiology, end-points to quality improvement initiatives, cohort studies and trials, and quality of life, symptoms and activation levels of people with kidney disease.
Research database title
The UK Renal Registry - a research database
Establishment organisation
The Renal Association
Establishment organisation address
Brandon House Building 20a1
Southmead Road
Bristol
BS34 7RR