Datasets in detail

Datasets are described in detail below - also see our entries at the HDR UK Innovation Gateway, in our Gut Reaction Collection.

In terms of HDR UK Data Utility Framework the Links column in the table below will allow us to meet objectives reviewed in September 2021, which are all around a potential data user being able to see what is available without having to ask us!

Dataset Source Abstract Participants Availability Release schedule Links
Health & Lifestyle Questionnaire NIHR BioResource Most NIHR BioResource participants complete a self-report form on recruitment. Typically this contains e.g. height, weight, smoking history and alcohol consumption, but also includes questions relating to disease history and current medications. 23,002 Available now Quarterly Form, catalogue (main part) revised, catalogue (medications and conditions) new, Gateway
Clinical report NIHR BioResource 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. 34,189 Available now Quarterly Form new, catalogue revised, Gateway
Demographics NIHR BioResource The NIHR BioResource acquires broad demographics – e.g. age, sex, ethnicity - from participants at recruitment. This is used to pre-screen or match participants when inviting them to take part in experimental medicine studies. 34,708 Available now Quarterly Form new, catalogue revised, Gateway
SNP chip data NIHR BioResource In order to do recall by genotype, participants have their DNA tested using one the SNP chip arrays from eg. Illumina and Affymetrix (now Thermosfisher). The current iteration is the UK Biobank v2.1 from Thermofisher, which measures ~820k markers. 12,390 Available now - additional batches to follow up to ~ 31,000 Quarterly Data available in PLINK & VCF formats. The content is described in a (large) annotation file. Gateway
SNP imputation data NIHR BioResource SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips. The NIHR BioResource is using a modified version of the UK Biobank protocol to improve the options for recall. 12,390 Available now - additional batches to follow up to ~ 31,000 Quarterly Data available in VCF format. Gateway
NHS Trust data NHS Trusts 10 NHS Trusts have been asked to provide detailed data on participants in their Trust. Categories of data requested include: test results; prescribing; imaging; digital pathology; data from disease-specific databases and registries; discharge summaries. 4,902 Under curation Available from October 2021 Holdings. Data largely coded to SNOMED-CT
IBD Registry IBD Registry The IBD Registry has the promise to bring Patient Reported Outcome Measures (PROMs) to the IBD Hub. However, these ~58k participants are currently provided de-identified by NHS Digital, and therefore a change in consent model is required to allow linkage. N/A Under ethical review Available from October 2021 Gateway
Whole genome/exome sequencing Wellcome Sanger Institute There is a substantial overlap between the IBD NIHR BioResource and the IBD UK Genetics Consortium (IBDGC). The NIHR BioResource provides some DNA samples. IBDGC data is being provided by the Wellcome Sanger Institute, who are performing the sequencing.

11,960 WES, 2,231 WGS

 

 Available now - additional batches of WES data to follow up to ~31k Quarterly Data available in BAM & VCF formats. Gateway
Consent NIHR BioResource The NIHR BioResource records consent dates and versions for each and every participant consent event. We also record use of opt-ins and opt-outs including pre-GDPR. This permits us to manage data releases in line with participants' expectations. 33,805 Applied to other releases Applied to other releases

Consent form new, Participant Information Sheet new, catalogue new, Gateway
Contact details NIHR BioResource 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. 33,794 Not available for research purposes  Not available for research purposes 

Form new, catalogue new,

Gateway
Sample holding NIHR BioResource NIHR BioResource samples are held at the NIHR National Biosample Centre in Milton Keynes. Metadata on what is available should become available through the UK CRC Tissue Directory, as mandated by Research Tissue Bank status. 21,442 DNA (more to be extracted), 29,395 plasma, 32,280 serum Available now Quarterly Catalogue new, Gateway

NB:

  1. Dictionaries, previously linked separately, are now on the Gateway for all entries with a catalogue listed here
  2. Participant numbers taken at 9th September 2021.

Further links will be added as content generated