Your involvement

The first thing to say is that it would not affect your usual care at all. The second thing is that you can opt out at any time and this wouldn’t affect anything either.

Before anyone is recruited into CAPS, your doctor (paediatric rheumatologist) will invite you and your parents or carers to be involved in the study. They will explain the study to you and give you information to take away with you so you have time to think about whether or not you want to be involved.

If you and your family do decide to get involved in CAPS, you will be asked for your agreement which will be recorded on a form. Your doctor or a research nurse will help with this.

As we said, your normal care won’t be affected at all.

What is different is that the information that is usually kept in your medical notes will also be shared with the CAPS researchers. The research nurse will copy the information into our database.

In addition we will contact you once a year for 5 years and ask you to fill in some of our questionnaires. These will be asking you about whether JIA is still affecting you, and if it is, how it is affecting you and your family.

Once 5 years has passed, we then contact you two years and 5 years later.

Once you are aged 16 we will talk to you again about whether you want to stay in the study. If so we carry on collecting data when you are 16, 18 and 21 years old.

Information that we collect in the CAPS study helps in many different ways.

• The CAPS researchers use the information to find out more about JIA and the best ways to treat it.
• Information is used to design new treatments and help to tell nurses and doctors how best to advise their patients.
• It also helps us to know what to tell other people who are affected by the condition.