About juvenile idiopathic arthritis and CAPS
What is juvenile idiopathic arthritis?
Juvenile idiopathic arthritis (usually called JIA) is the most common form of arthritis in children. In JIA, the immune system mistakenly attacks the lining of the joints, leading to swelling. This causes the joints to be sore with reduced movement.
The cause of arthritis is unknown. Some children get better quickly without much treatment , while other children may need to be treated for a longer period of time. Some children may also continue to have arthritis when they are adults. It affects about 15,000 children in the UK, which is roughly one child in an average-sized secondary school.
For more information on JIA, please visit the Arthritis UK website.
Why did we start CAPS?
We know that children and families have many questions about arthritis, and we want to help provide answers.
The Childhood Arthritis Prospective Study (CAPS) was established in 2001 and funded by Arthritis UK to collect long-term information on children newly diagnosed with arthritis, including linkage with NHS England for additional hospitalisation and health data.
Our aims are to find out why children and young people develop arthritis, and use their medical information to find out the best ways to ensure good long-term health and wellbeing. There is little long-term research into JIA, and another main aim of CAPS is to find out who gets better in adulthood, who doesn’t and why.
Our study looks at the following areas:
- social;
- clinical;
- psychological;
- genetics;
- treatment.
We focus on what happens to children and young people with JIA in both the short and long term, including :
- physical changes (joint inflammation/damage, disability, growth, pain);
- quality of life (education, leisure/sports activities, psychological impact);
- how people respond to treatments;
- how JIA changes over time and how long it lasts.
By understanding the cause of childhood arthritis, we may be able to prevent illness in future. Better understanding of the course of the illness will help in choosing the best treatment for children.
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.
Contributing CAPS centres
CAPS is coordinated by researchers at The University of Manchester in collaboration with seven hospitals throughout the UK. The chief investigator is Professor Kimme Hyrich.
The seven hospitals that contributed data to CAPS were:
- Alder Hey Children’s Hospital, Liverpool (Principal Investigator: Dr Gavin Cleary)
- Great Ormond Street Hospital for Children, London (Principal Investigator: Prof Lucy Wedderburn)
- Royal Hospital for Sick Children, Edinburgh (Principal Investigator: Dr Joyce Davidson)
- Royal Hospital for Children, Glasgow (Principal Investigator: Dr Joyce Davidson)
- Royal Manchester Children’s Hospital (Principal Investigator: Dr Alice Chieng)
- Royal Victoria Infirmary, Newcastle-Upon-Tyne (Principal Investigator: Dr Flora McErlane)
- University College London Hospitals (Principal Investigator: Dr Coziana Ciurtin)
Publications from the study
CAPS remains one of the largest inception cohorts for childhood arthritis in the world, and the data and samples available represent an extremely valuable resource. We continue to publish important research in this area.
See research publications relating to CAPS in The University of Manchester Research Explorer.
Contact us
Find out how to get in touch with us about the CAPS study.