Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 226 days ago
Documentation
Associated Media:
Description:
The dataset contains self-reported patient-level data for adults with chronic kidney disease (CKD) who are under the care of NHS hospital renal centres in England. The data are collected using a survey called "Your Health Survey" that includes identifiable information, socio-demographic information, a quality of life measure (EQ5D-5L), symptom measure (POS-S Renal) and patient activation measure (PAM). In 2016–2017 over 3,000 Your Health Surveys were collected by the UKRR as part of the quality improvement project ‘Transforming participation in chronic kidney disease’ and in 2018 ‘Transforming participation 2’ used the surveys to measure a coaching intervention in over 200 patients. See here for further information: https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/pam-and-prom-data
Coverage
Spatial:
United Kingdom,England
Typical Age Range:
18-150
Follow Up:
6 - 12 Months
Pathway:
The TPCKD data were collected from more than 3,000 patients with CKD, including
those on KRT, who were being treated at 10 renal centres in England between 2016
and 2018. The TP2 programme collected data from more than 200 patients with CKD,
not on KRT, being treated at 4 renal centres in England in 2018.
Provenance
Origin
Sources:
Paper-based
Collection Situations:
- Clinic
- Community
- Secondary care - Outpatients
Temporal
Accrual Periodicity:
Irregular
Distribution Release Date:
31 January 2019
Start Date:
04 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:
- Ethics approval required
- Geographical restrictions
- Project-specific restrictions
- Time limit on use
- User-specific restriction
- Not for profit use
- Institution-specific restrictions
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
3200
Count
04 January 2016