Enrolment of the first paediatric cohort into the Australian lupus registry and biobank: A single-centre experience
Authors' conclusion
We have established our centre as the first paediatric participating site of the ALRB, providing contemporary data on the clinical characteristics, serological profile and health-related quality of life outcomes of Australian children with SLE.
Study context
- Population
- Patients under 18 years with systemic lupus erythematosus (SLE) attending the paediatric rheumatology service of a single tertiary hospital, Australia27 eligible
- Participants
- 26 participants
- Outcome
- Feasibility of establishing the first paediatric cohort of the ALRB; enrolment data (clinical characteristics, serology, treatment, patient/parent-reported outcomes)
- Follow-up
- Enrolment
Methodological detailssingle-centre, registry enrolment data
- Single-centre
- Registry enrolment data
Main finding
As reported in the abstract
Enrolment feasibility
Consented for enrolment
26
96%
Consented for biobanking
25
92%
Observational data: associations, not effects.
Further findings
Clinical characteristics at enrolment
- Female
- 20 (77%)
- Median age at enrolment, years (IQR)
- 16 (13.7, 17.4)
- Median disease duration from diagnosis, years (IQR)
- 3.2 (1.4, 5.3)
- Synovitis
- 16 (62%)
- Cutaneous involvement
- 16 (62%)
- Serositis
- 4 (15%)
- Haematological involvement
- 17 (65%)
- Renal involvement
- 7 (27%)
Treatment · enrolment
- Prescribed ≥2 DMARDs
- 19 (73%)
- HCQ
- 22, 85%
- MMF
- 9, 35%
Disease activity and damage · enrolment
- Median SLEDAI-2K (IQR)
- 2 (2, 4)
- Active disease (SLEDAI-2K ≥6)
- 6 (23%)
- Damage on Systemic Lupus International Collaborating Clinics (SLICC)/American College of Rheumatology (ACR) DI
- 3 (11.5%)
Quality of life (Peds-QL) · enrolment
- Children completed
- 23 (88%)
- Parents completed
- 18 (69%)
- Scores across physical, emotional, social and school functioning comparable to previously studied paediatric cohorts with SLE and other chronic diseases
Original publication
Enrolment of the first paediatric cohort into the Australian lupus registry and biobank: A single-centre experience. Lupus. Published 8 April 2024. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →