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NIHR IBD BioResource: Contact detail

Population Size

34,065

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

Not applicable

Lead time statistic card

Summary

The NIHR IBD BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to re-contact participants to invite them to take part in experimental medicine studies.

Documentation

The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to recontact participants to invite them to take part in experimental medicine studies, although sample-only and data-only studies are permitted. We also record NHS number, where known, to allow linkage to healthcare records. Recruitment takes place at disease clinics. A participant is not considered a member of the NIHR IBD BioResource without contact details.

Dataset type

Health and disease, Information and communication

Dataset sub-type

Oral and gastrointestinal

Dataset population size

34065

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/https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/privacy-notice/https://bioresource.nihr.ac.uk/about-us/governance-and-ethics/

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Participants who have contact details

34065

COUNT

01 Sep 2021

Provenance

Purpose of dataset collection

Administrative

Collection source setting

Clinic, Community, Home

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Continuous

Version

6.0.0

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

13/01/2016

Time lag

Not applicable

Geographic coverage

United Kingdom

Minimum age range

18

Maximum age range

85

Follow-up

1 - 10 Years

Accessibility

Language

en

Controlled vocabulary

LOCAL, 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

Not applicable

Access request cost

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

Access method category

Varies based on project

Access service description

Some de-identified data may be released to researchers in a platform-independent filetype (e.g. CSV). However, access to any data acquired via NHS Digital is subject to strict restrictions governing where data may be accessed and from which locale - access in a Trustworthy Research Environment (TRE) at AIMES secure data centre (https://aimes.uk/).

Jurisdiction

GB-GB

Data use limitation

Research-specific restrictions

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, Information and communication

Dataset Sub-types: Oral and gastrointestinal

Collection Sources: Clinic, Community, Home

Relationships: