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NIHR IBD BioResource: Contact detail
Population Size
34,065
People
Years
2016
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
Not applicable
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
Keywords
Crohn's, IBD, colitis, recall
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
Time to dataset access
Not applicable
Access request cost
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/)