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
Children’s Wellbeing and Chronic Health Conditions
We are delighted to be able to share this in person opportunity for families living near Nottingham Trent University. The study is being conducted by Beccie Davis-Yates, Senior Lecturer & Associate Course Lead for Psychology. It has been designed to be a really fun activity session for children using ‘CoNavigator’ – a tool using colourful pegs, tiles and cubes to create a 3D map of everyone’s input!
What’s involved?
Participants will take part in 2 separate, in-person sessions designed to be both interactive and insightful. For children, this involves a 1 hour interactive session tailored to their age and needs, while parents or carers will participate in a separate 1 hour interactive session. These are held independently to ensure that both the children’s voices and the parents’ unique perspectives are fully captured and supported.
Why take part?
By participating in this study, you play a vital role in improving the collective understanding of children’s wellbeing and ensuring that their unique voices are heard. Your shared experiences provide the essential insights needed to develop better support systems for other families in the future. It is an opportunity to contribute to meaningful research that advocates for more compassionate and effective care for children living with chronic health conditions.
For more info and for any questions, please do get in touch with Beccie directly: beccie.davis-yates@ntu.ac.uk
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.
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/
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!
‘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
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.
Research Reports and Publications
Cluster Champions
The Cluster Champions, who are a group of patient and parents working alongside the Cluster Consortium, have worked with the Cluster Industry Committee and Cluster Researchers to develop an infographic to describe the journey of drug development. You can download this and see an interactive version here:
https://www.clusterconsortium.org.uk/patients-and-parents/drug-development-journey-and-durations/
For the first time, researchers have been studying small samples of tissue from the inflamed joints of children and young people with JIA. This work and the new understanding it brings could pave the way for more personalised treatments, enabling the teams to select the most effective treatment for any individual.
Many of you may have seen the short news item about this on ITV but if you missed it, you can catch up here
We are sharing the lay summary, a short description of the study with analysis of this image and what the colours represent.
Our thanks go to the children, young people and their families involved for allowing researchers to use their joint tissue. And we would also like to thank the research teams involved from University of Birmingham, University College London, Birmingham Children’s Hospital, Great Ormond Street Hospital and University of Oxford.
12 years ago, most rheumatology research focused only on adults or younger children. Adolescents often ‘missed out’ both in research and healthcare, leaving a big knowledge gap about this time of transition.
In 2012, the research teams at University College London (UCL) teamed up with rheumatology clinical teams at University College London Hospital (UCLH) and Great Ormond Street Hospital (GOSH). Together, they created the Centre for Adolescent Rheumatology, co-funded by Versus Arthritis and Great Ormond Street Hospital Charity, where doctors, nurses, researchers and patients work together on research projects that focus on adolescent health. This unique collaboration has led the way for a pioneering commitment to enhance and transform rheumatology care and research for young people.
You can read all about their work here:
Centre for Adolescent Rheumatology – Impact Report
We are pleased to announce that NCEPOD has released a new report – ‘Joint Care?’ – A review of the quality of care provided to children and young adults with juvenile idiopathic arthritis (JIA).
Click HERE to go to the study page where you can download the full report, summaries and additional QI resources. Please ask your healthcare team/GP if they have seen it.
Click here to watch the webinar recording marking the release of ‘Joint Care?’
Ever wondered what happens to your blood when you give it for research?
We are very excited to bring you this brand new ‘behind-the-scenes’ film made in collaboration with a young person with JIA. You can get exclusive access to follow a research blood sample right inside the lab alongside researcher Nia.
Take a sneak peek into the freezers, have a look down the microscope and check out the super speedy centrifuge!
We hope this will be interesting for anyone giving blood for research, for those having one-off or regular blood tests and for anyone keen on the science of what happens to blood in the lab.
Click here to watch the film on TikTok! https://vm.tiktok.com/ZNRSbPs8p/
NB: As with all our content, we recommend that parents of younger children watch this themselves first before sharing with their child.
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
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.
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!
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/
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: