We know how important research is to all the families we support and on this page we aim to bring you interesting and relevant information related to JIA, uveitis and paediatric rheumatology research.
It is quite likely that you and your family may be asked to take part in research and it is thanks to families who have taken part in research projects in the past, that new treatments are constantly being added to the management of JIA.
Are you a researcher and would like to involve CCAA or the families we support in your work?
Please get in touch with us by completing the Research Request Form using the link below.
Research projects currently open for participation
Your Rheum – Research Opportunity for Young People
If you are a young person aged between 11-24 and you are interested in research then you might like to join Your Rheum. There is a short video here explaining a bit about what happens at Your Rheum.
Being involved is a great way to meet others in the same position as you and to make a difference.
https://www.versusarthritis.org/about-arthritis/young-people/your-rheum
‘Managing Treatment eXperience’ (MTX) study
We are excited to collaborate with researcher Dr Daniela Ghio and Professor of Child Health Literacy, Lucy Bray, on this new project, which puts children and families at the heart of improving treatment experiences for young people living with rheumatic conditions.
The study, funded by the National Institute for Health and Care Research (NIHR), will co-create engaging, child-friendly resources to help children better understand and manage methotrexate. Children, parents, and healthcare professionals have all highlighted the urgent need for better information about methotrexate—designed with children, for children.
“Children have told us that taking methotrexate is one of the hardest parts of their condition,” says Daniela. “This project is about listening to their voices and co-creating tools that make a real difference in their treatment journey.”
Over the next 18 months, the research team will:
- Speak with 40 children aged 6–16 to understand their experiences with methotrexate
- Run creative workshops with children and parents to co-design resources like animations, activity books, and prompt cards
- Test and refine these tools to make sure they’re useful, accessible, and empowering
All details about this project can be found at www.mtxstudy.co.uk
The Childhood Uveitis Research Priorities Survey (CHURP)
Dr Lola Solebo is leading this important work around uveitis research.
She has created a survey for families affected by uveitis so that YOU can help prioritise the questions that YOU would like answered.
Please complete the survey if
- you are someone with uveitis which started when you were a child (under the age of 18)
- you are the parent/carer/guardian of a child with uveitis
Initial findings from the survey have just been shared with us – click here to read more.
More detailed reports from the survey are still being prepared and we will share them here as soon as they are available.
Thanks to Dr Solebo and her team!
IMPACT Study for Families
This is a current study aiming to produce a chatbot support tool for parents who have a child diagnosed with a paediatric rheumatological condition.
IMPACT are often looking for young people, siblings and parents to help them with this important work.
For more info you can see their video here: https://www.theimpactstudy.co.uk/
UK JIA Biologics Register
This is run by researchers at the University of Manchester. It includes two studies called Biologics for Children with Rheumatic Diseases (BRCD) and British Society for Paediatric and Adolescent Rheumatology Etanercept Study (BSPAR ETN). These studies aim to look at the safety and effectiveness of biologic and bio similar treatment for Juvenile Idiopathic Arthritis (JIA).
You can read more about information for study participants: https://sites.manchester.ac.uk/bcrdbspar/for-participants/
Here is some information about what they have discovered so far:
https://sites.manchester.ac.uk/bcrdbspar/for-participants/our-discoveries/
And here is the latest study review from 2024 highlighting their main work in the last year:
Current studies and where they are being run
If you would like to know more about the full range of JIA and other paediatric rheumatology research, where the studies are being run and who is leading them you might like to follow the Paediatric Rheumatology Clinical Studies Group on Facebook – on their page you can find an informative video about them and also a link to a leaflet they update regularly.
Getting involved in research can be good fun!
Many children and families like the fact that siblings can often be included. It is a good way to feel that you are doing something positive related to your child’s diagnosis and that you may be helping other families who have not yet been diagnosed. It is also another way to meet other families in the same situation as you.
Sometimes the consent forms can appear long but don’t be put off – if you don’t understand them, you just need to ask the researcher who will be more than happy to explain them to you – no question is ever too silly or small.
Hospital visits can be busy and stressful so if the time that a researcher approaches you is not the best time for you to talk, feel free to ask them for a contact number or email. Then you can call them when you have more time. Remember that researchers need you so will usually bend over backwards to ensure you feel supported and have the information you need.