QUANTIFYING THE BURDEN OF SYSTEMIC SCLEROSIS IN AUSTRALIA: FROM DATA LINKAGE TO PATIENT REPORTED OUTCOMES
Grant number: 1113954 | Funding period: 2016 - 2017
Systemic sclerosis (SSc) is a rare autoimmune disease with the potential to cause significant physical, financial and psychosocial burden on patients, their family members and wider community. The true ‘burden’ of SSc in Australia is unknown. My study aims to quantify this burden of disease and use our results to advocate for appropriate allocation of resources with the ultimate goal of improving patient outcomes and reducing the financial and human costs of this chronic rare disease.
Related publications (5)
A systematic review of the epidemiology, disease characteristics and management of systemic sclerosis in Australian adults
Kathleen Morrisroe, Wendy Stevens, Susanna Proudman, Mandana Nikpour
OBJECTIVE: Australia has one of the highest prevalence rates of systemic sclerosis (SSc) worldwide. In order to highlight manageme..
Survival and quality of life in incident systemic sclerosis-related pulmonary arterial hypertension
Kathleen Morrisroe, Wendy Stevens, Molla Huq, David Prior, Jo Sahhar, Gene-Siew Ngian, David Celermajer, Jane Zochling, Susanna Proudman, Mandana Nikpour
BACKGROUND: Pulmonary arterial hypertension (PAH) is a leading cause of mortality in systemic sclerosis (SSc). We sought to determ..
Epidemiology and disease characteristics of systemic sclerosis-related pulmonary arterial hypertension: results from a real-life screening programme
Kathleen Morrisroe, Wendy Stevens, Joanne Sahhar, Candice Rabusa, Mandana Nikpour, Susanna Proudman
BACKGROUND: Pulmonary arterial hypertension (PAH) is the leading cause of death in systemic sclerosis (SSc). Annual screening with..
Risk factors for development of pulmonary arterial hypertension in Australian systemic sclerosis patients: results from a large multicenter cohort study
Kathleen Morrisroe, Molla Huq, Wendy Stevens, Candice Rabusa, Susanna M Proudman, Mandana Nikpour
BACKGROUND: Pulmonary arterial hypertension (PAH) is the leading cause of mortality in patients with systemic sclerosis (SSc). We ..