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Research studies

Systemic lupus erythematosus (SLE or Lupus) is the archetypal multisystem autoimmune disease, with an estimated incidence of 5-50 cases per 100,000 people.

Patients with SLE, usually young women, suffer a loss of life expectancy, and morbidity, due to a heterogeneous range of clinical manifestations caused by autoimmune-mediated inflammation of multiple organs. The diversity of clinical features of active SLE has made quantification of disease activity problematic.


The APLC was formed in November 2012 to bring together physicians and researchers dedicated to improving the quality of care provided to patients with SLE. Given the lack of established treatment algorithms and treatment targets in lupus, the APLC has pooled resources to create the largest cohort of lupus patients ever studied. This has facilitated multiple epidemiological studies which produce robust evidence on which to base recommendations for the management of SLE.

2013-2017

LLDAS Validation Study

 

 

First multi-national, prospective, validation study of Lupus Low Disease Activity State (LLDAS), demonstrating that LLDAS attainment provides significant protection from organ damage accrual and flare in patients with systemic lupus erythematosus (SLE)

2018-2022

T2T -SLE Study

 

Extension and expansion of LLDAS validation study aimed to capture longer follow up data and more patient recruitment to further examine LLDAS and remission definitions

Dataset with 4,106 patients & >42,000 visits from 25 sites in 13 countries

2023-2028  

SLE Outcomes Study (SOS)

 

SOS : Determinants of Long Term Outcomes in SLEis the next phase of the APLC's research ambitions. An interplay among several determinants contributes to long-term outcomes of SLE. Particular attention to the role of common commorbidities associated with SLE

SOS Logo_edited.jpg

APLC was formed

 Industry partner initiated studies

2013-16 Data pool

Industry partner initiated studies and 2022 Data pool

  • APLC Executive Committee was formed

  • Conceptulized defination of lupus low disease activity state (LLDAS)

  • Launched LLDAS prospective validation study

  • Recruited 1st patient in Thailand

  • Longer-term validation of LLDAS

  • Longer-term validation of remission definitions

  • Longitudinal associations of LLDAS & remission on HRQoL

  • Non-Monash APLC Investigator-led studies

  • Clinical lab variables as continuous data

  • An interplay among several determinants contributes to long-term outcomes of SLE.

  • Comorbidities is one of many determinants of SLE.

  • Need to better understand the impact of these determinants on long-term outcomes

Patient recruitement and data collection is ongoing

Current Assets for collaboration

 

~50,000 visits dataset

 

~5,000 SLE patients

~1,000 Inception cohort patients

Figure: SOS Study: Determinants of long-term outcomes of SLE. Figure adapted from Arnaud & Tektonidou, 2020 Rheumatology

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