Datasets in detail TEST
Datasets are described in detail in the table below
You can find similar information via our entries at the HDR UK Innovation Gateway, in our Gut Reaction Collection.
Dataset | Source | Abstract | Participant number | Availability | Release schedule | Links |
Health & Lifestyle Questionnaire | 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 |
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Clinical report | 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 | ||
Demographics | The NIHR BioResource acquires broad demographics 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 | ||
SNP chip data | In order to recall by genotype, participants have their DNA tested using one of 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 |
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SNP imputation data | 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 | ||
NHS Trust data | 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 |
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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 | ||
Whole genome/ exome sequencing | 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 | ||
Consent | 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 | ||
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 | |
Sample holding | 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) 29,310 plasma 32,280 serum | Available now | Quarterly | ||
IBD Registry COVID-19 | A consented IBD dataset of 9,800 participants, with a further 30,000 ethically-permissioned records for research related to COVID-19 and IBD. Includes patient demographics, medications plus vaccinations, responses and care received April 2020-June 2021. | Available now (linkable to Gut Reaction Datasets for COVID only studies) | Data collection complete |
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IBD Registry Main dataset | The IBD Registry captures longitudinal clinical data on IBD patients from NHS Trusts. The dataset includes demographics; diagnosis and phenotype; medications (greater details on biologics); interventions; clinical assessment and PROMS. | Available*,† | Data collection continuous |
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*for retrospective studies (service evaluation and quality of care), and for research with prospective recruitment of consented patients for data already held.
†Not currently linkable to other Gut Reaction Datasets but linkable to other datasets available through NHS Digital.