Participation in the CAPS study will not affect routine clinical care. During routine visits to the local Paediatric Rheumatologist, the CAPS Research Nurse will ask the parent to complete a Nurses Visit Form which asks about the child’s arthritis and general health. The CAPS Research Nurse will extract data from the patient’s medical case notes (including details of joint examinations, blood test results and x-ray results) and record the information on a CAPS specific form. The Paediatric Rheumatologist will record information on a separate form.
All patients are contacted annually for 5 years and then again at 7 and 10 years. At the age of sixteen, the young person will be given the opportunity to re-consent to the study. To improve our understanding of the impact of chronic illness in general, and JIA in particular, on adolescents and young adults, we have introduced further questionnaires at 16, 18 & 21 years. The re-consent form and 16 year questionnaire will be sent just after the sixteenth birthday. The 18 and 21 year questionnaires will be sent thereafter. It is extremely important to follow-up all study participants. To understand why some children get better, we need to collect information on individuals in remission as well as those who remain unwell. Therefore, we are hoping to obtain consent for the age specific questionnaires and flagging from all study participants.
Once the information is collected from the CAPS participants, it is transferred, together with any blood samples, x-ray, and ultrasound information to the Arthritis Research UK Epidemiology Unit in Manchester. The data is transferred to the database, checked and then analysed by the research team.
What does the study involve?
Recruitment to the study:
All eligible children and young people are identified in their hospital by their Paediatric Rheumatologist at the point of diagnosis.
The Paediatric Rheumatologist will invite the child or young person to join the study, explaining the aims of CAPS and the study protocol and providing CAPS Information Sheets for the parents and the child. The family will be encouraged to take their time thinking about whether they wish to join the study. The decision about whether or not to join the study will not affect the routine clinical care of the child.
If the family decide to participate in CAPS, consent/assent will be obtained from the parent/child by the Paediatric Rheumatologist or CAPS Research Nurse.