Tag: crohn's

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.

The NIHR IBD 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.

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 summari ...

The NIHR IBD BioResource acquires contact details - name, address, email address, phone/mobile number - from participants at recruitment. This is used to re-contact participants to invite them to take part in experimental medicine studies.

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.

NIHR IBD 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.

SNP chip data can be used to impute many of the (non-rare) SNPs not included on the chips. The NIHR IBD BioResource is using a modified version of the UK Biobank protocol to improve the options for recall.

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.

There is a substantial overlap between the NIHR IBD 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 sequenci ...

The NIHR IBD 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.

Most NIHR IBD 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.