From: Proceedings of the 28th European Paediatric Rheumatology Congress (PReS 2022)
Data Categories | Data Elements |
---|---|
Demographics | Date of birth, country of residence, sex, gender, ancestry, date of SLE symptom onset, date of SLE diagnosis, family history of SLE in a 1st degree relative |
SLE Classification Criteria | 2012 SLICC, 2019 EULAR/ACR |
Visit Data | Blood pressure, height, weight, menarche status, menstrual cycle status |
Disease Activity | SLEDAI-2K, physician global assessment, patient/parent global assessment |
SLE-related Damage Index | SLICC Damage Index |
Laboratory Tests | Complete blood count, c-reactive protein, erythrocyte sedimentation rate, ANA, ENA, dsDNA, antiphospholipid antibodies, C3/C4, IgG, creatinine, albumin, urine protein:creatinine, urine microscopy |
Kidney Biopsy Data | ISN/RPS class, biopsy date (for each biopsy) |
Medications | Steroids, immunomodulators, anti-hypertensives, lipid-lowering agents, anticoagulants, contraception, anti-depressants, anti-epileptics |
Serious Adverse Events | Hospitalization, ESRD, dialysis, kidney transplant, pregnancy, malignancy, death |