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UK Renal Registry - Kidney PREM dataset
Population Size
60,000
People
Years
2016
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
2-6 months
Summary
Anonymous patient-level data for adults and young people or their parents/carers with CKD who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales. The data are collected annually via a national survey.
Documentation
The dataset contains self-reported patient-level data for adults adults and young people or their parents/carers with CKD who are under the care of NHS hospital renal centres in England, Northern Ireland, Scotland and Wales. The data are collected annually via a national survey. Kidney PREM data are anonymised and include socio-demographic information and 39 questions measuring patient experience of kidney care. The kidney PREM has been collected since 2016 and in 2019 almost 16,500 people treated at almost all of the UK’s adult renal centres participated. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/kidney-prem-data
Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
60000
Keywords
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | 60000 | Count | 02 Oct 2020 |
Provenance
Purpose of dataset collection
Disease registry, Care
Source of data extraction
Electronic survey, Paper-based
Collection source setting
Clinic, Secondary care - Outpatients, Home, Community
Patient pathway description
Adults and young people or their parents/carers who attend renal units and centres throughout the UK are invited to complete an anonymous annual paper-based or online survey that contains 39 questions relating to their experience of the care received for their kidney disease at their renal unit or centre.
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
02/10/2021
Citation Requirements
UK Renal Registry, UK Kidney Association
Coverage
Start date
03/01/2016
Time lag
2-6 months
Geographic coverage
United Kingdom
Minimum age range
12
Maximum age range
150
Follow-up
0 - 6 Months
Accessibility
Language
en
Controlled vocabulary
LOCAL
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 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.
Jurisdiction
GB-GB
Data use limitation
General research use
Data use requirements
Project-specific restrictions,Geographical restrictions,Not for profit use,Time limit on use,Institution-specific restrictions,User-specific restriction
Data Controller
UK Kidney Association
Investigations