BPSU - Juvenile-onset Systemic Lupus Erythematosus (JSLE)

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 (CYP) 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. 

back to the BPSU

HLythgoe-Headshot.JPGLead investigator

Dr Hanna Lythgoe,
Alder Hey Children’s NHS Foundation Trust,  
Eaton Road,
Liverpool L12 2AP

Overview

JSLE or ‘childhood lupus’ is a rare multisystem illness where the immune system attacks many parts of the body. JSLE can be very variable 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.

ACR criteria one page summary.jpgCase definition

Please report any child / young person aged up to 18 years of age whom you have seen in the past month who:

1. Has a new, consultant diagnosis of suspected JSLE 
 
AND
 
2. Fulfils 2 or more ACR criteria (PDF, 194KB) AND / OR has lupus nephritis on biopsy
 
AND

3. Has no alternative diagnosis for relevant disease features.

Duration

September 2017 to September 2018 (13 months of surveillance). Follow-up until September 2019 (12 month follow-up).

Funding

This study is being funded by the BPSU/RCPCH Sir Peter Tizard Bursary and LUPUS UK.

Approval

Approved by North West Liverpool East REC, reference: 17/NW/0095 and has been granted Section 251 HRA-CAG permission (CAG Reference: 17/CAG/0075).

This study has been granted Public Benefit and Privacy Panel for Health and Social Care (PBPP) approval in Scotland (PBPP reference: 1516-0292).

Support group

Further information

Partners

LupusGrouplogo.png