The UK Renal Registry: a research database
Research type
Research Database
IRAS ID
199545
Contact name
Katharine M Evans
Contact email
Research summary
The UK Renal Registry
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
16/NE/0042
Date of REC Opinion
22 Mar 2016
REC opinion
Favourable Opinion
Data collection arrangements
Patient identifiable information - such as name, date of birth and NHS number - is collected to allow patients treated in different renal units and hospitals to be followed across different hospitals and clinics - from chronic kidney disease to dialysis to transplant or recovery. This identifiable data is transferred electronically to the registry in a scrambled format and stored on a highly secure computer meeting national standards. Only 2-3 people at the Registry have access to this identifiable information.\n\nOnce the data has been cleaned and duplicate cases linked at the Registry, all identifiable information is removed and replaced by a scrambled patient identification code before the data is used for audit or research. Only the 2-3 previously mentioned people at the Registry 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.\n
Research programme
The Registry’s research programme covers a broad range of patients with kidney disease, including those with:\n1. “Acute kidney injury“ - where kidney function decreases suddenly during an illness\n2. “Chronic kidney disease“ - where kidney function declines gradually and irreversibly\n3. “End-stage kidney disease“ - when the kidneys fail altogether and dialysis or kidney transplantation are considered.\nData captures the treatments patients receive and how they fare on those treatments, including blood results, survival and quality of life. Data is also collected that summarises the complexity of the patients being treated, such as age and medical history, and allow research comparing centres and treatment approaches.[COVID-19 amendment – 29/04/2020] In response to the COVID-19 pandemic, in late March 2020 the UKRR started to collect a limited number of data items from renal centres regarding infection of renal patients with SARS-COV-2. These data are collected primarily for audit purposes to enable renal centres in a region to work together to protect renal patients. The UKRR would also like to use these data in research analyses to understand the impact of COVID-19 on kidney patients. 2) A widening of the description of types of epidemiological research conducted at the UKRR to include case-mix adjusted analyses and risk factor-outcome type analyses.\n3) The UKRR now has permission from the Health Research Authority to collect data about patients with all stages of chronic kidney disease, i.e. stages 1 to 5 rather than only patients with stages 4 and 5 as noted on the IRAS form.\nThese amendments affect the following sections of the IRAS form:\n- Part A, section 6 (’Summarise the types of data to be stored’)\n- Part A, section 16 (’What types of research will be undertaken and in what field(s) of health or social care?’)\n- Part A, section 27-1 (’How and by whom will records be identified?’)
Research database title
The UK Renal Registry
Establishment organisation
The UK Renal Registry
Establishment organisation address
Learning and Research, Southmead Hospital
Westbury-on-Trym
Bristol
BS10 5NB