Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 227 days ago
Documentation
Associated Media:
Description:
The dataset contains patient-level data for adults under the care of NHS hospital renal 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 renal 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 renal centres in the UK on KRT and each year collects data on about 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 with CKD stages 4 and 5 at the end of 2016, to more than 34,000 adults at the end of 2019. These numbers will continue to rise as more renal centres submit data – in 2019 the UKRR received data from only 17 of the UK’s 70 adult renal centres. In total, this dataset holds information on about 240,000 people on KRT or with advanced CKD. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckdaki-clinical-dataset.
Coverage
Spatial:
United Kingdom
Typical Age Range:
0-150
Follow Up:
Continuous
Pathway:
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 renal 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 renal 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 renal 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.
Provenance
Origin
Collection Situations:
- Clinic
- Secondary care - Outpatients
- Secondary care - In-patients
Temporal
Accrual Periodicity:
Annual
Distribution Release Date:
30 June 2021
Start Date:
01 January 1997
Time Lag:
More than 6 months
Accessibility
Access
Access Service:
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 Renal
Association 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.
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.
Delivery Lead Time:
Not applicable
Jurisdictions:
GB
Data Controller:
UK Renal Registry, The Renal Association
Usage
Data Use Limitations:
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
Resource Creators:
UK Renal Registry, The Renal Association
Format and Standards
Vocabulary Encoding Schemes:
SNOMED CT
Languages:
en
Formats:
csv or xlsx or sas7bdat
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Since 1997 the UKRR has collected data on c. 240,000 patients who are treated at hospital renal centres in England, Northern Ireland, Scotland and Wales who are either on KRT or have CKD.
240000
Count
31 December 2019