Childhood Arthritis Prospective Study (CAPS)

A national cohort study for children and young people newly diagnosed with arthritis.

The Childhood Arthritis Prospective Study (CAPS) recruited children and young people newly diagnosed with arthritis between 2001 and 2019.

We want to find out what might help predict how patients with juvenile idiopathic arthritis (JIA) will manage over the long-term. This will help in choosing the best treatment for children and young people now and in the future.

We link CAPS participants’ data with data from NHS England so we can better understand how JIA develops over a much longer time than the length of the study. Read more about how patient data is being used, and how to withdraw your data from the study.

On this page:

Patient data linkage and how to opt out 

CAPS has collected detailed clinical and genetic information on over 1,700 children and young people. It is now linked to NHS England data for a greater understanding of how JIA develops into adulthood. 

This means that if you or your child have consented to take part in the CAPS study, the data belonging to you or your child from both the study and the NHS is now linked.  

Read more: How patient data is being used
Read more: the steps we take to protect your data

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About juvenile idiopathic arthritis and CAPS 

Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It causes sore joints and reduced movement.  

The Childhood Arthritis Prospective Study (CAPS) was established in 2001, with funding by Arthritis UK, to collect long-term information on children newly diagnosed with arthritis. 

See research publications relating to CAPS in The University of Manchester Research Explorer. 

CAPS publications

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Contact us

Please get in touch if you want to withdraw your data from the CAPS study, or have any questions or complaints. 

Opting out of CAPS or data linkage 

If you have previously consented to joining CAPS and now want to opt out of your data being used in the CAPS study or being linked with your NHS England data, please get in touch with the project administrator. You are also welcome to contact us with questions or concerns about any aspect of this study. 

Lianne Kearsley-Fleet 
Email: lianne.kearsley-fleet@manchester.ac.uk  
Tel: +44(0)161 275 1646  

Learn more: How we use patient data

Minor complaints 

If you have a minor complaint, you need to contact the researchers in the first instance:  

Prof Kimme Hyrich 
Email: kimme.hyrich@manchester.ac.uk  
Tel: +44 (0)161 275 5044 

Formal complaints 

If you wish to make a formal complaint, or if you are not satisfied with the response you have gained from the researchers in the first instance, please contact the Research Governance and Integrity Manager: 

Email: research.complaints@manchester.ac.uk  
Tel: +44(0)161 275 2674 or +44 (0)161 275 2046 

Address: 

Research Office, Christie Building 
The University of Manchester 
Oxford Road 
Manchester, M13 9PL 

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