Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 227 days ago
Documentation
Associated Media:
Description:
The dataset contains self-reported patient-level data for adults with chronic kidney disease (CKD) or an acute kidney injury (AKI) on dialysis 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
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-150
Follow Up:
0 - 6 Months
Pathway:
Adults 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
Collection Situations:
- Clinic
- Secondary care - Outpatients
- Home
- Community
Temporal
Accrual Periodicity:
Annual
Distribution Release Date:
01 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"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-GB
Data Controller:
The Renal 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, The Renal 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
01 October 2020