WA Rheumatic Disease Epidemiologic Register (WARDER):
WARDER is a big-data project of population-based routinely-collected administrative health data over 35 years for patients with rheumatic diseases with individual health data tracked over time in four WA Health registries namely Hospital Morbidity Data System for all admissions, WA Cancer Registry for cancer development , WA Mortality Registry and the Emergency Department Data Collection for all ED visits. These de-identified data are then linked through the Western Australian Data Linkage System with data of half a million individuals (half with rheumatic disease patients and half are age and gender matched controls) stored on the secure UWA research server.
1a) Collaboration established with researcher Dr J Tieu and medical scientist S Lester at the Basil Hetzel Institute/ Adelaide University regarding outcomes (mortality /cancer risk) in patients with ANCA associated vasculitis
- two presentations to be presented at EULAR 2020 (which now will be an e-Congress) with respective manuscripts in preparation
1b) Ankylosing spondylitis project (M Ognjenovic/E Kelty)
- one paper on risk factors for vertebral fracture in AS patients published (see below)
- one paper on mortality and causes of death completed and submitted
- one manuscript on cancer survival in preparation
1c) IgA vasculitis project (J Nossent):
- 2 more papers published (see below)
- 2 additional papers submitted for review (two to be presented at EULAR 2020)
- one manuscript on impact of comorbid conditions in IgAV in preparation
- awarded best clinical research poster prize at APLAR 2019 meeting
1d) Rheumatoid Arthritis project (K Almutairi)
- RA prevalence metanalysis paper submitted (accepted for EULAR 2020)
- data collection for WARDER ICD coding validity for RA completed- paper in preparation
- RA hospital admission rate and reasons paper in planning phase
1e) Gout project (H Keen/D Lopez/W Raymond):
- data extraction and cleaning complete; projects planned are:
- risk for myocardial infarction flowing gout flare
- mortality risk for gout patients in WA
1f) Giant cell arteritis (GCA) project (H Keen):
- data extraction and cleaning complete; projects/analyses planned:
- GCA prevalence in WA /GCA and mortality risk/GCA and blindness
1g) Systemic Lupus Erythematosus project (W Raymond):
- mortality risk and causes of death for SLE patients in WA submitted
- cardiovascular events risk and outcome in SLE – ongoing analysis
- viral infections as a cause and consequence of SLE (collaboration with University (Hospital) Tromso in Norway
1h) Juvenile arthritis project (TBA):
- in planning phase with applications for funding pending
2) Perth Lupus Nephritis study:
- paper published on prognostic relevance of histological findings of Tubuloreticular bodies (see below)
- paper presented at ACR 2019 on usefulness of repeat biopsies – manuscript in preparation
3) Perth Lupus Registry:
- 181 patients in SCGH catchment have consented
- continuous data entry
- new research assistant recruited (Michael Furfaro)
- redevelopment of online database (Redcap) near completion
- HREC approval extended to 2025/approval for expansion to FSH/RPH sites ongoing
- 2 papers from PLR data (on clinical SLE features and on direct health care cost for SLE in WA) to be presented at EULAR 2020
4) Collaboration with assoc. profs G. Eilertsen and G. Bakland at the University (Hospital) Tromsø in Norway on the Tromsø SLE study and axial SpA cohort studies has been concluded with 4 papers published (see list below).
List of published scientific papers (all papers acknowledge the support provided by AOWA):
