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UK Renal Registry - Kidney PREM dataset

Population Size

60,000

People

Population Size statistic card

Years

2016

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

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

Access rights

https://renal.org/audit-research/how-access-data/ukrr-data/apply-access-ukrr-data

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

https://renal.org/audit-research/projects/ukrr

Enrichment and Linkage

Investigations

https://renal.org/audit-research/projects/ukrr

Dataset Types: Health and disease

Collection Sources: Clinic, Secondary care - Outpatients, Home, Community

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