UK Juvenile Systemic Lupus Erythematosus registry and Repository "Clinical characteristics and immunopathology of juvenile-onset systemic lupus & erythematosus"

Research summary

UK-wide study of children and young people with juvenile-onset SLE. The aims of establishing a collaborative national Cohort Study and Repository of patients with JSLE with comprehensive collection of clinical data as well as biological samples are to: 1. Facilitate hypothesis driven research into JSLE 2. Determine the demographics of JSLE 3. Perform descriptive analyses of disease presentation, activity, and damage in JSLE and response to medication 4. Determine prognostic markers in JSLE 5. Establish the mortality rate of patients with JSLE and describe the causes of death 6. Determine the long-term malignancy rate in JSLE, and describe it’s characteristics 7. Assess the validity and reliability of a paediatric version of BILAG 8. To undertake comparative studies with other lupus cohorts 9. To set standards of care for management of patients with JSLE 10. Develop a cohort of patients suitable for recruitment to clinical interventional trials 11. Create a repository of biological material as a basis for the investigational research into JSLE 12. Facilitate international collaborative studies and trials 13. Evaluate long term outcomes of JSLE through follow-up into adulthood

Principal Investigator

Dr Kathryn Bailey

Contact us

Email: childrensresearch@ouh.nhs.uk

IRAS number

34195