How we use your data
There is little long-term research into juvenile idiopathic arthritis (JIA). One of the main aims of CAPS is to find out who gets better in adulthood, who doesn’t and why. This involves looking at patient data that has been collected in the study and by NHS England.
Why we’re linking your CAPS and NHS data
As part of this study, we link your data with data from NHS England (previously called NHS Digital) to better understand how JIA develops beyond the length of the study. This is because NHS England collects information on health outcomes and hospital admissions (such as when a child is admitted to hospital) across the UK. With your permission, the CAPS researchers use this information to provide a more detailed picture of children’s health outcomes into adulthood that could benefit the research. Data linkage to NHS England is being funded through Arthritis UK.
What does data linkage involve?
An organisation called NHS England has information about the health of everyone in the country, and they store details about any hospital stays or serious illnesses that people experience.
When you consent to be involved in CAPS, you may have given consent for your name, date of birth and NHS number (or CHI number if you are in Scotland) to be shared with other national databases (including NHS England).
This means that if you experience a really serious illness, such as cancer, then the study will be informed of these events directly by the national databases. This is a resource that is really important for research into health and diseases such as JIA, as the information that we get from NHS England and other national databases is added to the information that we have already collected from your healthcare team.
This makes our data more complete, stronger and more reliable. In addition to the information collected from your hospital notes and by linking to NHS England, we also may have collected a blood or saliva sample for genetic studies.
How to opt out of CAPS or data linkage
When you consented to join the CAPS study, you may have opted in (or out) of this data linkage on the consent form. This data linkage will continue even after the age of 16 years old.
If you would like to opt out of this data linkage, you are free to withdraw consent at any time. Please note that NHS England will apply the national opt-out criteria to the data linkage (if applicable).
Please contact the project administrator if you would like to do one or more of the following:
- Withdraw your consent for participation in the CAPS study.
- Opt out of the data linkage with NHS England.
- Ask for more information.
Contact details
Lianne Kearsley-Fleet
Email: lianne.kearsley-fleet@manchester.ac.uk
Tel: +44(0)161 275 1646
Address:
Biologic Studies Group
Room 2.903, Stopford Building
Oxford Road
Manchester
M13 9PL
How we protect your data
Learn about the measures we take to ensure the security of patient data in the study
Contact Us
+44 (0) 161 306 6000
