CLUSTER JIA-Uveitis Research Database
Research type
Research Database
IRAS ID
310244
Contact name
Kimme Hyrich
Contact email
Research summary
CLUSTER JIA-Uveitis Research Database
REC name
South West - Central Bristol Research Ethics Committee
REC reference
22/SW/0115
Date of REC Opinion
1 Sep 2022
REC opinion
Favourable Opinion
Data collection arrangements
Datasets containing NHS numbers and original biological sample IDs from 2 clinical trials at the University of Liverpool will be disclosed to the University of Manchester. This data has already been collected from patients with juvenile idiopathic arthritis who also have an inflammatory eye condition called uveitis. As consent for future research was not obtained from the patients, we have sought support from REC and CAG to gain access to this data. The NHS numbers and trial sample IDs will be stored at the University of Manchester in a Data Safe Haven – this is a very secure data storage system with very limited access to approved persons only. The NHS numbers will then be encrypted (pseudonymised) and the original NHS numbers deleted. This will then allow us to use these pseudonymised NHS numbers to find out if a child participated in both clinical trials. The sample IDs will be used to link a patient’s clinical (physician measurements, disease activity, height etc.) and biological (analysed blood samples) data. The original sample ID will then be replaced with a CLUSTER ID so the data can be analysed by other CLUSTER researchers, without them knowing the original ID.
Research programme
This database is part of the MRC-funded CLUSTER consortium which uses data from existing studies in childhood arthritis (JIA) and JIA-uveitis (an inflammatory eye condition). CLUSTER researches personalised medicine – this is using clinical and biological data to find out if there are certain physical characteristics (e.g. disease severity or markers in your blood/DNA) associated with different disease outcomes or response to medication. This is very important as JIA/JIA-uveitis medications are expensive, and children often have to try multiple ones and experience many side effects to find which one works for them. The database is vital to creating an encrypted (pseudonymised) dataset that can be used to try to predict disease outcomes for JIA-uveitis and create tests to find out which treatment is best for individual patients. Research findings in JIA-uveitis can also help research in similar inflammatory diseases that affect adults and children (such as JIA, rheumatoid arthritis, or lupus).
Research database title
CLUSTER JIA-Uveitis Research Database
Establishment organisation
The University of Manchester
Establishment organisation address
Oxford Road
Manchester
M13 9PG