2367: UK Renal Registry - Bacteraemia infections in patients with chronic kidney disease
Source: gov.uk (2025-08-04)

The UK Renal Registry (UKRR) collects information from kidney centres and hospital laboratories to improve the care of patients with kidney disease in the UK. Every year we produce a report that helps the government, doctors, patients, and the public to understand how centres are performing compared to each other, where standards are being met and whether they are not, and what the patterns of care and treatment results might tell us about the future.

About the project

What the project aims to do

We wish to help healthcare professionals to reduce infection related sickness, death and hospital stays, in kidney patients needing treatment.

We will use information related to infection, sickness, death and hospital stays to improve our understanding and inform guidance for patient care.

Why this project is important

The UK Renal Registry (UKRR) collects information from kidney centres and hospital laboratories to improve the care of patients with kidney disease in the UK. Every year UKRR produce a report that helps the government, doctors, patients, and the public to understand how centres are performing compared to each other, where standards are being met and whether they are not, and what the patterns of care and treatment results might tell us about the future. It is important to learn more about infection in kidney patients needing treatment because it can cause both sickness and death and is a common cause for them having emergency hospital stays. Those needing dialysis (a procedure to remove waste products and excess fluid from the blood when the kidneys stop working properly) can get infected when preparing for or having the procedure. This is made worse because their body’s natural defence system that helps fight infections doesn’t work properly either. About 20% of these patients will die.

In the past Public Health England (PHE) provided UKRR with the information we needed on kidney patient infections. This work enabled UKRR to guide doctors to help these patients suffer from less infections.

Who the data is about

Patients with chronic kidney disease.

How the data will be used

UKRR plan to look at infections alongside other information already held by the UKRR for patients who had dialysis during 2020. UKRR currently publish data in tables and figures in annual report which is then available publicly on their website. The figures show how the infection numbers vary between kidney centres and from these it is clear to see where lower or higher than expected levels of infection are. Each kidney centre will look at these to find out how they are doing and where they can or must improve.

For these purposes, the identifiers of patients held by the UKRR will be securely sent to the UKHSA for the linkage to take place. Patients who have opted-out locally (that is, directly with their kidney centre or with the UKRR) will not be included in the cohort sent to the UKHSA.

The data will be stored on servers provided by AIMES Management services and only accessible by UKRR employees who require access as part of their job roles, namely members of our systems team to ensure the secure transfer of the data, and statisticians to conduct the analysis of the data sent for use in the UKRR’s audit.

How often data is needed

Annual release.

How this project will benefit public health and the public

The UKRR report is published annually around June and July at the same time as their annual conference. The information included in the report is reviewed and discussed by delegates. Healthcare professionals use this information to compare their infection rates to other kidney centres and geographical areas. Commissioners use information held in the report to determine audit or research priorities for the future and to steer funding streams. Patient summaries help patients to understand trends. All will consider ways care and outcomes can be improved and where possible new guidance and standards will be produced.

Planned project outputs and communication

The research will appear in:
- Peer reviewed scientific journals
- Conference presentation
- Website
Lawful processing of personal and special category personal data

Under the UK General Data Protection Regulation (UK GDPR), the data required for this project is classified as special category personal data. This means that, in order for the processing of this data to be lawful, there must be both a lawful basis for processing under Article 6 and a separate condition for processing under Article 9 of the UK GDPR.

Legal basis for using personal data (Article 6)

UK GDPR Article 6(e): processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the Controller

Legal basis for using special category personal data (Article 9)

UK GDPR Article 9(2)(j): processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

Common law duty of confidentiality

The data needed for this project includes Confidential Patient Information – meaning data that can both identify an individual and relate to their health or care, shared in a context where confidentiality is expected and protected.

Confidential Patient Information is subject to a strict duty of confidentiality. It can only be used with the patient’s explicit consent or under specific legal provisions that permit its use – for example, for medical research or public health purposes.

How is the duty of confidentiality set aside

Regulation 5, Health Service (Control of Patient Information) Regulations 2002

National Data Opt-Out

Opt-out preferences will not be applied.

The National Data Opt-Out does not apply, as an exception has been granted by the Secretary of State for Health and Social Care. For further information, see the programmes to which the National Data Opt-Out should not be applied (https://digital.nhs.uk/services/national-data-opt-out/programmes-to-which-the-national-data-opt-out-should-not-be-applied).

Digital Object Identifier

Organisatons Research Organisation Registry (ROR) ID

ROR ID (https://ror.org/01zpyjx73)