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UK Renal Registry - Your Health Survey dataset

Population Size

3,200

People

Population Size statistic card

Years

2016

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

England

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

Summary

Patient-level data for adults with CKD who are under the care of NHS hospital renal centres in England. The data are collected using the 'Your Health Survey', which includes EQ5D-5L, POS-S Renal and PAM.

Documentation

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

Dataset type

Health and disease

Dataset sub-type

Not applicable

Dataset population size

3200

Associated media

https://renal.org/audit-research/data-permissions/data/ukrr-ckd-patient-measures-dataset/pam-and-prom-data https://thinkkidneys.nhs.uk/CKD

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

3200

Count

04 Jan 2016

Provenance

Purpose of dataset collection

Care, Audit, Disease registry

Source of data extraction

Paper-based

Collection source setting

Clinic, Community, Secondary care - Outpatients

Patient pathway description

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.

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Static

Version

1.0.0

Modified

08/10/2024

Distribution release date

31/01/2019

Citation Requirements

UK Renal Registry, UK Kidney Association

Coverage

Start date

04/01/2016

Time lag

Not applicable

Geographic coverage

England

Minimum age range

18

Maximum age range

150

Follow-up

6 - 12 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 UK Kidney 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

Ethics approval required,Geographical restrictions,Project-specific restrictions,Time limit on use,User-specific restriction,Not for profit use,Institution-specific restrictions

Data Controller

The UK Kidney Association

Investigations

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

Enrichment and Linkage

Investigations

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

Dataset Types: Health and disease

Collection Sources: Clinic, Community, Secondary care - Outpatients

Relationships:

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