The UK IBD Registry
Research type
Research Database
IRAS ID
291501
Contact name
Liz Dobson
Contact email
Research summary
The UK Inflammatory Bowel Disease (IBD) Registry – a research database
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
22/NE/0009
Date of REC Opinion
14 Jan 2022
REC opinion
Favourable Opinion
Data collection arrangements
Data will be collected either directly from the patient, or from their healthcare provider.
The data collected can be categorised as:
1. Patient identifiable information (including name, NHS number, date of birth, email address )
2. Longitudinal clinical IBD data (including demographics, IBD diagnosis, disease activity, medications and quality of care received)
3. Patient-entered data (including diagnosis, health & lifestyle, self-assessed impact of their IBD (PROMS)Research programme
Research must be in alignment with the IBD Registry's aims and purpose, namely, to improve the health of people living with IBD in the UK by increasing understanding of the care and treatments they receive.
Research database title
The UK Inflammatory Bowel Disease (IBD) Registry – a research database
Establishment organisation
IBD Registry Ltd
Establishment organisation address
3 St Andrews Place
Regent's Park
London
NW1 4LB