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UK Renal Registry - CKD and AKI on Dialysis Dataset
Population Size
300,000
People
Years
1997
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
2-6 months
Summary
Patient-level data for adults and children with chronic kidney disease (CKD) or adults with an acute kidney injury (AKI) on dialysis who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales.
Documentation
The dataset contains patient-level data for adults under the care of NHS hospital kidney centres in the UK who have chronic kidney disease (CKD - mostly stages 4 and 5), as well as adults and children on kidney replacement therapy (KRT) for end-stage kidney disease (ESKD), and adults with an acute kidney injury (AKI) on dialysis at a kidney centre. The data are collected daily, quarterly or annually and include patient identifiable information, socio-demographic and clinical data. Since 2007 the UKRR has had 100% coverage of all people under the care of kidney centres in the UK on KRT and each year collects data on over 70,000 people on KRT. Coverage of people with CKD under the care of renal centres (excluding those on KRT) is lower – data collection commenced in 2016 and has increased from almost 17,000 adults recorded with CKD stages 4 and 5 up to the end of 2016, to more than 80,000 adults by the end of 2022. These numbers will continue to rise as more kidney centres submit data – in 2022 the UKRR received data from only 18 of the UK’s 67 adult kidney centres. In total, this dataset holds information on over 300,000 people on KRT or with advanced CKD. See here for further information: https://ukkidney.org/audit-research/data-permissions/data/ukrr-ckdaki-clinical-dataset.
Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
300000
Keywords
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | Since 1997 the UKRR has collected data on c. 300,000 patients who are treated at hospital kidney centres in England, Northern Ireland, Scotland and Wales who are either on KRT or have CKD. | 300000 | Count | 31 Dec 2022 |
Provenance
Purpose of dataset collection
Disease registry, Audit
Source of data extraction
EPR, Electronic survey, Other
Collection source setting
Clinic, Secondary care - Outpatients, Secondary care - In-patients
Patient pathway description
The dataset includes all adults and children in the UK who are on kidney replacement therapy (KRT - kidney transplant or dialysis). The UK Renal Registry (UKRR) only collects data on adults with chronic kidney disease (CKD) who are under the care of hospital kidney centres in the UK, i.e. the UKRR does not collect data on those with CKD in primary care. Those with CKD who are not on KRT generally only come under the care of kidney centres once they have reached advanced CKD, i.e. stages 4 and 5. The UKRR collects data on all adults with an acute kidney injury (AKI) who receive dialysis at a hospital kidney centre. The UKRR does not collect data on patients who receive dialysis in other settings for an AKI, e.g. in critical or intensive care.
Image contrast
Not stated
Biological sample availability
None/not available
Structural Metadata
Details
Publishing frequency
Annual
Version
1.0.0
Modified
08/10/2024
Distribution release date
30/06/2024
Citation Requirements
UK Renal Registry, UK Kidney Association
Coverage
Start date
01/01/1997
Time lag
More than 6 months
Geographic coverage
United Kingdom
Maximum age range
150
Follow-up
Continuous
Accessibility
Language
en
Controlled vocabulary
SNOMED CT
Format
csv or xlsx or sas7bdat
Data Access Request
Dataset pipeline status
Available
Time to dataset access
2-6 months
Access request cost
Charges may apply for new aggregate data and extracts of pseudonymous patient level data. The charges are to recover the costs of managing the application process and preparing extracts of data. The costs depend on the level of service required from the UKRR and whether this is limited to a simple extract of data, or requires additional input such as methodological or statistical support. The UKRR can advise on costs once the expression of interest is received and applicants may also be requested to complete a costing form.
Access method category
Direct access
Access service description
Data are released to researchers who have successfully gone through the UKRR's data application process. Prior to any data sharing with successful applicants, a fixed term data sharing agreement (DSA) is drawn up between the UKKA and the recipient. This specifies the scope of the analyses permitted, the data items to be shared, the frequency of the data sharing, the names of the researchers and the time limit beyond which data must be destroyed.
Jurisdiction
GB
Data use limitation
General research use
Data use requirements
Not for profit use,Ethics approval required,Geographical restrictions,Project-specific restrictions,Time limit on use,User-specific restriction,Institution-specific restrictions
Data Controller
UK Renal Registry, UK Kidney Association
Investigations
Enrichment and Linkage
Investigations