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Table 1 (abstract P301). Data elements voted into the “Core cSLE Dataset” by consensus meeting participants (≥ 80% agreement)

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