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NIHR IBD BioResource: NHS Trust data

Population Size

6,269

People

Population Size statistic card

Years

2021

Years statistic card

Associated BioSamples

DNA

Plasma

Associated BioSamples statistic card

Geographic coverage

United Kingdom

England

Geographic coverage statistic card

Lead time

2-6 months

Lead time statistic card

Summary

10 NHS Trusts have been asked to provide detailed data on participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; discharge summaries.

Documentation

The NIHR IBD BioResource comprises ~34k participants with Inflammatory Bowel Disease (IBD). For the Gut Reaction programme, 10 NHS Trusts have been asked to provide detailed data on the participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; and discharge summaries. While the formats and contents will vary, the hope is that this will be a much richer source of data than nationally collated datasets, like NHS Digital.

Dataset type

Health and disease, Treatments/Interventions, Measurements/Tests, Imaging types

Dataset sub-type

Oral and gastrointestinal

Dataset population size

6269

Associated media

https://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction-data-sourceshttps://bioresource.nihr.ac.uk/centres-programmes/ibd-bioresource/gut-reaction/

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Participants from NHS Trusts that have provided additional EHR data as part of Gut Reaction.

6269

COUNT

02 Jul 2021

Provenance

Purpose of dataset collection

Study

Source of data extraction

EPR

Collection source setting

Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients

Image contrast

Not stated

Biological sample availability

DNA,Plasma,Serum

Details

Publishing frequency

Irregular

Version

1.0.0

Modified

08/10/2024

Citation Requirements

NIHR BioResource. Acknowledgement text: "We thank NIHR BioResource volunteers for their participation, and gratefully acknowledge NIHR BioResource centres, NHS Trusts and staff for their contribution. We thank the National Institute for Health Research, NHS Blood and Transplant, and Health Data Research UK as part of the Digital Innovation Hub Programme. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care."

Coverage

Start date

01/10/2021

Time lag

2-6 months

Geographic coverage

United Kingdom, England

Minimum age range

18

Maximum age range

85

Follow-up

1 - 10 Years

Accessibility

Language

en

Controlled vocabulary

NHS NATIONAL CODES

Format

text, csv

Data Access Request

Dataset pipeline status

Not available

Access rights

https://bioresource.nihr.ac.uk/using-our-bioresource

Time to dataset access

2-6 months

Access request cost

https://bioresource.nihr.ac.uk/using-our-bioresource/industry-researchers/industry-bioresource-usage-costs/

Access method category

TRE/SDE

Access service description

Data may only be accessed in an approved Trustworthy Research Environment (TRE).

Jurisdiction

GB-GB

Data use limitation

Research use only

Data use requirements

Institution-specific restrictions,Project-specific restrictions,Return to database or resource,Time limit on use,User-specific restriction

Data Controller

Cambridge University Hospitals NHS Foundation Trust (CUH)

Data Processor

Data processors are NIHR BioResource staff, others with Letters of Access to CUH and approved members of staff at the data centre (AIMES, https://aimes.uk/)

Dataset Types: Health and disease, Treatments/Interventions, Measurements/Tests, Imaging types

Dataset Sub-types: Oral and gastrointestinal

Collection Sources: Secondary care - Accident and Emergency, Secondary care - Outpatients, Secondary care - In-patients

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