BPSU study - 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.

Lead investigator

Dr Hanna Lythgoe
Alder Hey Children’s NHS Foundation Trust
Eaton Road
Liverpool L12 2AP
Email: bpsulupus@alderhey.nhs.uk

About the study

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.

You can download the protocol card, including references, below.

Case 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 and/or has lupus nephritis on biopsy

AND

3. Has no alternative diagnosis for relevant disease features.

Reporting instructions

Please report any child/young person aged up to 18 years of age who meets the case definition.

Duration

September 2017-September 2019 (25 months of surveillance). Follow-up until September 2020 (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