Bookmarks
NIHR IBD BioResource: Case report form
Population Size
33,904
People
Years
2016
Associated BioSamples
DNA
Plasma
Geographic coverage
United Kingdom
Lead time
2-6 months
Summary
Each participant recruited has an IBD-specific CRF completed by their clinical care team. These are non-exhaustive - we have the chance to ask for more information - but form the basis of analysis and recall.
Documentation
The NIHR IBD Bioresource comprises ~34k participants with Inflammatory Bowel Disease (IBD). The NIHR IBD BioResource acquires a case report form at recruitment for each participant recruited on the basis of their disease. Typically variables include questions that may be used to partition or group patients by their disease course and severity, and include disease history and medication use. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. De-identified versions of this data are available to researchers investigating the feasibility of future studies.
Dataset type
Health and disease, Treatments/Interventions
Dataset sub-type
Oral and gastrointestinal
Dataset population size
33904
Keywords
IBD, Crohn's, colitis, recall, clinical, CRF, feasibility, cohort discovery
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | Participants who have clinical data (disease and/or medication data collected at recruitment by a healthcare professional) | 33904 | COUNT | 01 Sep 2020 |
Provenance
Purpose of dataset collection
Study
Source of data extraction
Paper-based
Collection source setting
Clinic
Image contrast
Not stated
Biological sample availability
DNA,Plasma,Serum
Structural Metadata
Details
Publishing frequency
Quarterly
Version
6.0.0
Modified
08/10/2024
Distribution release date
31/03/2021
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
1-2 months
Geographic coverage
United Kingdom
Minimum age range
18
Maximum age range
85
Follow-up
1 - 10 Years
Accessibility
Language
en
Controlled vocabulary
SNOMED CT, HPO
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
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 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/)