Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 424 days ago
UK Renal Registry - Kidney PREM dataset
Dataset
Documentation
Description:
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 and almost 16,500 people treated at almost all of the UK 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
Coverage
Spatial:
United Kingdom
Typical Age Range:
12-150
Follow Up:
0 - 6 Months
Pathway:
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.
Provenance
Origin
Purposes:
- Disease registry
- Care
Sources:
- Electronic survey
- Paper-based
Collection Situations:
- Clinic
- Secondary care - Outpatients
- Home
- Community
Temporal
Accrual Periodicity:
Annual
Distribution Release Date:
02 October 2021
Start Date:
03 January 2016
Time Lag:
2-6 months
Accessibility
Access
Access Service:
Data are released to researchers who have successfully gone through the UKRR
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:
2-6 months
Jurisdictions:
GB-GB
Data Controller:
UK Kidney Association
Usage
Data Use Limitations:
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
Resource Creators:
UK Renal Registry, UK Kidney Association
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Languages:
en
Formats:
csv or xlsx or sas7bdat
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
60000
Count
02 October 2020