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NIHR BioResource: Contact detail
Population Size
142,966
People
Years
2005
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
Not applicable
Summary
The NIHR 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.
Documentation
The NIHR Bioresource consists of several groups of participants: ~70k from the general population and blood donors (COMPARE, INTERVAL and STRIDES studies); ~19k with one of ~50 rare diseases (RD) including a ~5k pilot for GEL; ~30k with Inflammatory Bowel Disease (IBD) which include the members of Gut Reaction, the Health Data Research Hub for IBD; and ~20k with Anxiety or depression (GLAD study). It intends to extend recruitment in all areas, and to other rare and common disease groups, with a target of ~300k by 2022. The NIHR 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 blood donor centres, disease clinics, online (particularly for the Mental Health BioResource) but also from more public settings. A participant is not considered a member of the NIHR BioResource without contact details. NHS number availability depends on recruitment method: blood donors and those recruited through clinics will have these to hand, general members of the public will not.
Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
142966
Keywords
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | Participants who have contact details | 142966 | COUNT | 26 Nov 2020 |
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
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
02/02/2005
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
TRE/SDE
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 is currently via an experimental safe haven built in Microsoft Azure.
Jurisdiction
GB-GBN
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/)