Juvenile-onset Systemic Lupus Erythematosus
Surveillance of Juvenile-onset Systemic Lupus Erythematosus (JSLE) commenced in September 2017. This study aims to determine the incidence of JSLE in children and young people in the UK and Ireland. The data will be analysed to better understand the epidemiology and clinical features of the disease and how children and young people are accessing care.
Overview
JSLE or ‘childhood lupus’ is a rare multisystem illness where the immune system attacks many parts of the body. JSLE can vary in how it manifests, with some children and young people having a mild disease and others having a very severe disease (e.g. developing kidney failure or brain abnormalities). If it starts in childhood or adolescence it is generally much more severe, and requires more use of steroids and other potent medications which suppress the immune system (immune-suppressant medications) than in adults.
Although we say around 15-20% of cases start in childhood, there is a great lack of strong studies examining the actual number of cases of JSLE in the UK and Republic of Ireland. This means that the overall burden of illness caused by JSLE is unknown.
Investigators
Dr Stefania Vergnano
Bristol Royal Hospital For Children
Level 6, UBHT Education Centre
Upper Maudlin Street
Bristol BS2 8AE
Email: stefania.vergnano@uhbristol.nhs.uk
Professor Paul T Heath
Professor of Paediatric Infectious Diseases
Paediatric Infectious Diseases Research Group, Division of Clinical Sciences, Jenner Wing, Level 2, Room 2.213
St Georges, University of London
London SW17 0RE
Published papers
Lythgoe H, Smith EMD, Midgley A, Beresford MW, Hedrich CM. Prospective epidemiological study of juvenile-onset systemic lupus erythematosus in the UK and Republic of Ireland. Rheumatology (Oxford). 2022;61(10):4097-4106. doi:10.1093/rheumatology/keac064
Webinar
In February 2023 Dr Hanna Lythgoe, Professor Michael Beresford, Dr Eve Smith and Sammy Ainsworth presented an update on JSLE diagnosis, investigation and management; the impact of JSLE on patients; shared results from the UK BPSU JSLE study and explained the role of LUPUS UK