Incidence of JSLE in CYP and their Access to Care in the UK and ROI

• Research type

  Research Study

• Full title

  The Incidence of Juvenile-onset Systemic Lupus Erythematosus in children and young people and their Access to Care in the UK and Republic of Ireland

• IRAS ID

  211962

• Contact name

  Lucy Cooper

• Contact email

  lucy.copper@alderhey.nhs.uk

• Sponsor organisation

  Clinical Research Business Unit

• Duration of Study in the UK

  2 years, 1 months, 26 days

• Research summary

  Juvenile-onset Systemic Lupus Erythematosus (JSLE) or ‘childhood lupus’ is a rare disease where the body’s defence (immune) system attacks many parts of the body. JSLE can be very variable in how it shows itself, 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). Diagnosis can be challenging because of the very many ways the disease presents and many children and young people experience a delay in diagnosis.

  This study will ask paediatricians and other doctors who see children and young people under 18 years of age with JSLE to report all new cases that they see over a one year period. If they have seen a new case they will be asked to fill in a short confidential questionnaire about the child/young person at diagnosis and after one year of follow-up. This study will be supported by the British Paediatric Surveillance Unit (BPSU).

  We will analyse the questionnaires to understand:
  • How many new cases of JSLE there are each year in the UK and Ireland
  • How many children and young people with JSLE meet current and new classification criteria
  • How JSLE affects children and young people at diagnosis and after one year e.g. how many have kidney, skin or other problems
  • How long it takes for children to receive a diagnosis from the onset of symptoms
  • Who looks after children and young people with JSLE and which treatments are used in the first year after being diagnosed with JSLE

• REC name

  North West - Liverpool Central Research Ethics Committee

• REC reference

  17/NW/0095

• Date of REC Opinion

  22 Feb 2017

• REC opinion

  Favourable Opinion