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NIHR BioResource: NHS Trust data
Population Size
Not reported
Years
2014
Associated BioSamples
DNA
Plasma
Geographic coverage
United Kingdom
England
Lead time
2-6 months
Summary
Data received as part of the HDR UK Sprint Exemplar project, on up to 1600 participants with one of 3 rare diseases (BPD, PAH, PID) at one of the 5 NHS Trusts (Cambridge, Leeds, Liverpool, Newcastle and Papworth).
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. NHS Trust data were received as part of the HDR UK Sprint Exemplar project, on up to 1600 participants with one of 3 rare diseases (BPD, PAH, PID) at one of the 5 NHS Trusts (Cambridge, Leeds, Liverpool, Newcastle and Papworth).
Dataset type
Health and disease
Dataset sub-type
Not applicable
Keywords
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
7.0.0
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
01/10/2014
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
Time to dataset access
2-6 months
Access request cost
Access method category
TRE/SDE
Access service description
Data may only be accessed in an approved Trustworthy Research Environment
Jurisdiction
GB-GBN
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/)