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The Centre for Adolescent Rheumatology Versus Arthritis at UCL, UCLH and GOSH, is the world’s first centre dedicated to understanding arthritis and related conditions in adolescents.
Adolescence is a time of significant change in terms of physical, emotional and educational development. Most research focuses around adults and younger children, with adolescents often ‘missing out’. With very little research carried out on this age group, a big knowledge gap remains about this time of transition.
The Centre aims to fill this gap through education, transitional clinics, and in undertaking high quality state-of-the art research to ensure that adolescents and young people with rheumatic conditions receive the best care and treatment.
- Theme 1. Adolescent related juvenile idiopathic arthritis (JIA) Includes Enthesitis related arthritis (ERA), novel imaging and pain.
In adolescents and young adults with arthritis, we aim to improve outcomes and understanding of the complex set of conditions called juvenile idiopathic arthritis through a range of studies.
The data, information and samples we collect allow us to investigate how arthritis progresses during childhood, adolescence and through to adult life.
We are also interested in understanding how bacteria in the human gut influences arthritis, in improving biomarkers for arthritis, and in understanding the mechanisms and experiences of pain in young patients with JIA
We are exploring critical questions such as:
- What are the long-term outcomes of arthritis starting in childhood
- How can we validate new targets for treatment in enthesitis related arthritis?
- How does bacteria in the human gut influence arthritis?
- Can Magnetic Resonance Imaging (MRI) be used as a biomarker tool to measure inflammation reliably?
- What causes persistent pain in JIA?
- What are the molecular and cellular signatures associated with the disease?
- Improve our ability to predict how best to taper or stop medication in JIA
Academic leads:
- Theme 2. Biology of the adolescent immune system (Includes Endocrine work)
We aim to understand how the immune system changes during puberty, and further identify the underlying mechanisms of juvenile systemic lupus erythematosus (JSLE).
Our main aims include:
- Defining how the immune system changes in puberty
- Investigating the cellular and molecular signatures of the disease as well as gene expression for individual patient characterisation
- Studying products related to metabolism in juvenile onset SLE: identifying new biomarkers and sex differences to predict cardiovascular risk
- Investigating the role of iron deficiency and other cell markers in explaining fatigue in JSLE
- Biomarkers associated with specific organ involvement in JSLE
Academic leads:
- Professor David Isenberg
- Dr Coziana Ciurtin
- Dr Elizabeth Rosser
- Theme 3. Improving healthcare with data science and technology.
We aim to understand and improve care for adolescents and young adults with rheumatic disease enabled and facilitated by data science and technology for our service users (patients and families) but also more widely across the UK.
We explore questions such as:
- What technology can we use to improve the care of young people with rheumatic diseases?
- How can we empower young people to self-manage their disease?
- How do we effectively manage clinical and research data (‘wrapped around’ patients) to flow across organisations (locally and nationally) in a safe and efficient manner? And, how do we leverage these data flows as toolkits for the research community (nationally and internationally) and to improve the quality of care for patients?
- Can we benchmark rheumatology services to better understand the access to and portfolio of care available across the country? And if so, can we map out a process to provide more of what young people with rheumatic disease want?
Academic leads:
- Professor Debajit Sen
- Dr Socrates Varakliotis
- Ms Ayesha Khatun
- Theme 4. Rare diseases and their long-term outcomes.
We aim to understand the mechanisms and outcomes of Juvenile Dermatomyositis (JDM), vasculitis, and autoinflammatory conditions by looking closely at immune cells and molecules, changes to blood vessels as well as genetic variation. We are also interested in identifying genetic causes of rare inflammatory diseases, so that we can understand these diseases better and improve the care and treatment we provide.
Our main objectives are:
- Understanding the mechanisms and outcomes in juvenile dermatomyositis
- Understanding the way blood vessels are altered in Juvenile Dermatomyositis
- Looking at novel genes that may cause of alter inflammatory syndromes affecting blood vessels
- Gene therapy in deficiency of adenosine deaminase
- Assessing efficacy of biologic treatments in non-ANCA Associated Vasculitis
- Lifelong management of Kawasaki disease
- Understanding the natural history and long-term outcomes of juvenile Sjogren’s syndrome
- Identify immune and cellular fingerprints of juvenile Sjogren’s syndrome
Academic leads:
- Theme 5. National Network (BANNAR)
BANNAR is a group of interested and committed professionals from medical, nursing, allied health professional and third sector backgrounds working in adolescent and young adult (AYA, aged 10-24) rheumatology.
We aim to:
- Act as a focus of, and reference point for, a UK-wide network in professionals in AYA rheumatology research covering a spectrum of disease, research methods and implementation science
- Provide a network across the UK to empower young people with rheumatic disease (and their families/social networks) to contribute to relevant research and help develop future research priorities
- Recognise that providing the best clinical care for AYAs with rheumatic disease requires a good evidence base, but that AYA rheumatology is a neglected research area that we need to improve
BANNAR project officer:
- Sarah Yorke
Co-Chairs: