The IBD Registry is closing current activities by Easter 2024, and is in discussions through Spring 2024 about possible transition to an NHS organisation. See our Closure Announcement, Data Transfer Update, Closure FAQs and Achievements. 

Data Protection Impact Assessments (DPIAs)

We undertake Data Protection Impact Assessments (DPIAs) to ensure we build in data protection from the very start of any new project or significant changes.

NameDescription
COVID-19 IBD Risk ToolA web-based tool for people with Crohn’s disease, ulcerative colitis or unspecified IBD so they can assess their level of risk relating to COVID-19 and communicate it to their IBD specialist team and the NHS.
COVID-19 follow-on surveyCOVID-19 second survey
Gut Reaction data linkageProduce a secure consistent repeatable process to generate a linkage file that enables a researcher to identify which records in data sets provided by IBD Registry Ltd are the same as records in data sets provided by another data controller (for example the NIHR Bioresource) without the exposure of any confidential data relating to data subjects (peer-to-peer record linkage process).
Direct data flow to the Registry platformHolding data for participants of the Registry signed up using the new consent options (including identifiable data)
Online participation including e-consente-consent on REDCap for the new consent process and participants database