Juvenile-onset Systemic Lupus Erythematosus (Childhood lupus)
Systemic lupus erythematosus (SLE) is a multi-system, autoimmune disorder with a wide range of clinical presentations. SLE is often referred to as ‘lupus’.
Despite advances in our understanding of SLE, the cause remains unknown. Both genetic and environmental factors appear to lead to over-activation of parts of the body’s own immune system. This leads to the immune system attacking different parts of the body, leading to the symptoms of SLE. SLE is uncommon in adults and even more uncommon in children. About 15 – 20% of patients develop SLE in childhood or adolescence.
When SLE presents in childhood or adolescence it is called juvenile-onset SLE (JSLE) or ‘childhood lupus’. JSLE differs in some important aspects from the disease in adults. Childhood-onset disease is generally more severe than adult-onset disease. Survival rates from JSLE have improved. However,there is still a significant associated morbidity or burden from the disease or treatments used to treat children. This underlines the need for a better understanding of this condition and better therapies.
The rarity of JSLE (affecting about 60-300 children in a million each year in the UK) makes it very difficult to carry out research into the condition. This website gives information about the work of the UK JSLE Study Group, including information for patients, parents and health professionals.
UK JSLE Study Group
In 2006 a group of leading UK Paediatric Rheumatologists, Nephrologists and other specialists formed the UK JSLE Study Group. The UK JSLE Study Group is a multi-disciplinary group of paediatric rheumatologists, nephrologists and dermatologists, adult rheumatologists, nurse specialists, lay representatives and basic scientists from all over the UK. Its members represent almost all of the major paediatric centres in the UK. Its aims are to develop a comprehensive research program to investigate the "Clinical characteristics and immunopathology of JSLE".
The group set up the UK JSLE Cohort Study and Repository in 2006.The study regularly collects clinical data from patients participating in the study as well as biological specimens such as blood and urine. The data and specimens facilitate lots of research into JSLE. Please see the Cohort Study section for more information.
The resource is open to collaborative project applications from other researchers who can apply to conduct research using the existing Cohort data.