IMPROVING OUTCOMES IN SYSTEMIC AUTOIMMUNE DISEASE: A COLLABORATIVE AND INTERDISCIPLINARY PROGRAM OF RESEARCH
Grant number: 1126370 | Funding period: 2017 - 2020
The multi-organ autoimmune diseases ‘scleroderma’ and ‘lupus’ have a profound negative impact on quality of life and life expectancy. The overall goal of my research is to improve patient outcomes in these two diseases. My collaborative and interdisciplinary research program entails quantifying disease burden, identifying patient subsets, optimising screening for complications, developing outcome measures for use in practice and research, and trialing new therapies.
Related publications (49)
Occupational silica exposure in an Australian systemic sclerosis cohort
Shreeya Patel, Kathleen Morrisroe, Susanna Proudman, Dylan Hansen, Joanne Sahhar, Malcolm R Sim, Gene-Siew Ngian, Jenny Walker, Gemma Strickland, Michelle Wilson, Nava Ferdowsi, Gabor Major, Janet Roddy, Wendy Stevens, Mandana Nikpour
Objective To determine the frequency of self-reported occupational exposure to silica in SSc patients enrolled in the Australian S..
Can Patient-Reported Symptoms Be Used to Measure Disease Activity in Systemic Sclerosis?
Laura Ross, Wendy Stevens, Michelle Wilson, Gemma Strickland, Jennifer Walker, Joanne Sahhar, Gene-Siew Ngian, Janet Roddy, Gabor Major, Susanna Proudman, Murray Baron, Mandana Nikpour
OBJECTIVE: To evaluate the association between patient-reported symptoms and changes in disease activity over time in systemic scl..
The clinical and economic burden of systemic sclerosis related interstitial lung disease
Kathleen Morrisroe, Wendy Stevens, Joanne Sahhar, Gene-Siew Ngian, Nava Ferdowsi, Dylan Hansen, Shreeya Patel, Catherine L Hill, Janet Roddy, Jennifer Walker, Susanna Proudman, Mandana Nikpour
OBJECTIVE: To quantify the burden of interstitial lung disease (ILD) in SSc. METHODS: Clinical data for SSc patients enrolled in t..
High disease activity status suggests more severe disease and damage accrual in systemic lupus erythematosus
Rachel Koelmeyer, Hieu Tri Nim, Mandana Nikpour, Ying B Sun, Amy Kao, Oliver Guenther, Eric Morand, Alberta Hoi
OBJECTIVE: Disease severity in SLE is an important concept related to disease activity, treatment burden and prognosis. We set out..
How do surgeons' trade-off between patient outcomes and risk of complications in total knee arthroplasty? a discrete choice experiment in Australia
Sandie Szawlowski, Peter FM Choong, Jinhu Li, Elizabeth Nelson, Mandana Nikpour, Anthony Scott, Vijaya Sundararajan, Michelle M Dowsey
OBJECTIVE: To measure the trade-off between risk of complications versus patient improvement in pain and function in orthopaedic s..
Development and validation of the Scleroderma Clinical Trials Consortium Damage Index (SCTC-DI): a novel instrument to quantify organ damage in systemic sclerosis
Nava Ferdowsi, Molla Huq, Wendy Stevens, Marie Hudson, Mianbo Wang, Tien Tay, Jodie L Burchell, Sam Mancuso, Candice Rabusa, Vijaya Sundararajan, David Prior, Susanna M Proudman, Murray Baron, Mandana Nikpour, Tracy Frech, Marie Hudson, Susanna Proudman, Wendy Stevens, Tien Tay, Souyma Chatterjee
OBJECTIVE: We sought to develop the first Damage Index (DI) in systemic sclerosis (SSc). METHODS: The conceptual definition of 'da..
Generation of a Core Set of Items to Develop Classification Criteria for Scleroderma Renal Crisis Using Consensus Methodology
Emily-Ann Butler, Murray Baron, Agnes B Fogo, Tracy Frech, Cybele Ghossein, Eric Hachulla, Sabrina Hoa, Sindhu R Johnson, Dinesh Khanna, Luc Mouthon, Mandana Nikpour, Susanna Proudman, Virginia Steen, Edward Stern, John Varga, Christopher Denton, Marie Hudson, April Barnado, Murray Baron, Elana J Bernstein
OBJECTIVE: To generate a core set of items to develop classification criteria for scleroderma renal crisis (SRC) using consensus m..
Lupus Low Disease Activity State (LLDAS) discriminates responders in the BLISS-52 and BLISS-76 phase III trials of belimumab in systemic lupus erythematosus
Shereen Oon, Molla Huq, Vera Golder, Pei Xuan Ong, Eric F Morand, Mandana Nikpour
OBJECTIVE: We evaluated the discriminant capacity of the Lupus Low Disease Activity State (LLDAS) in post-hoc analysis of data fro..
Defining primary systemic sclerosis heart involvement: A scoping literature review
Laura Ross, David Prior, Susanna Proudman, Alessandra Vacca, Murray Baron, Mandana Nikpour
BACKGROUND: Clinically evident primary heart involvement due to systemic sclerosis (SHI) is considered a poor prognostic factor an..
Severe gastrointestinal disease in very early systemic sclerosis is associated with early mortality
Nicolas Richard, Marie Hudson, Mianbo Wang, Genevieve Gyger, Susanna Proudman, Wendy Stevens, Mandana Nikpour, J Pope, M Larche, N Khalidi, A Masetto, E Sutton, D Robinson, TS Rodriguez-Reyna, D Smith, C Thorne, PR Fortin, M Fritzler, L Croyle, J de Jager
OBJECTIVES: To examine the incidence, predictors and outcomes associated with severe gastrointestinal (GI) disease in a large ince..
Development of the Asia Pacific Lupus Collaboration cohort
Rangi Kandane-Rathnayake, Vera Golder, Worawit Louthrenoo, Shue-Fen Luo, Yeong-Jian Jan Wu, Zhanguo Li, Yuan An, Aisha Lateef, Sargunan Sockalingam, Sandra V Navarra, Leonid Zamora, Laniyati Hamijoyo, Yasuhiro Katsumata, Masayoshi Harigai, Madelynn Chan, Sean O'Neill, Fiona Goldblatt, Yanjie Hao, Zhuoli Zhang, Jamal Al-Saleh
AIM: The aim of this manuscript is to describe the development of the Asia Pacific Lupus Collaboration (APLC) cohort. METHOD: The ..
Significance of anti-neutrophil cytoplasmic antibodies in systemic sclerosis
Jayne Moxey, Molla Huq, Susanna Proudman, Joanne Sahhar, Gene-Siew Ngian, Jenny Walker, Gemma Strickland, Michelle Wilson, Laura Ross, Gabor Major, Janet Roddy, Wendy Stevens, Mandana Nikpour
BACKGROUND: Up to 12% of patients with systemic sclerosis (SSc) have anti-neutrophil cytoplasmic antibodies (ANCA). However, the m..
An Interim Report of the Scleroderma Clinical Trials Consortium Working Groups.
Murray Baron, Bashar Kahaleh, Elana J Bernstein, Lorinda Chung, Philip J Clements, Christopher Denton, Robyn T Domsic, Nava Ferdowsi, Ivan Foeldvari, Tracy Frech, Jessica K Gordon, Marie Hudson, Sindhu R Johnson, Dinesh Khanna, Zsuzsannah McMahan, Peter A Merkel, Sonali Narain, Mandana Nikpour, John D Pauling, Laura Ross
The Scleroderma Clinical Trials Consortium (SCTC) represents many of the clinical researchers in the world who are interested in i..
Cost savings with a novel algorithm for early detection of systemic sclerosis-related pulmonary arterial hypertension.
Alannah QUINLIVAN, Susanna Proudman, Joanne Sahhar, Wendy Stevens, Mandana Nikpour, null on behalf of the Australian Scleroderma Interest Group (ASIG)
Pulmonary Arterial Hypertension (PAH) is an important cause of death and disability in Scleroderma (SSc) patients. Yearly screenin..
Patient-reported outcome instruments for assessing Raynaud's phenomenon in systemic sclerosis: A SCTC vascular working group report
John D Pauling, Tracy M Frech, Michael Hughes, Jessica K Gordon, Robyn T Domsic, Marina E Anderson, Francesca Ingegnoli, Neil J McHugh, Sindhu R Johnson, Marie Hudson, Francesco Boini, Voon H Ong, Marco Matucci-Cerinic, Nezam Altorok, Marina Scolnik, Mandana Nikpour, Ankoor Shah, Janet E Pope, Dinesh Khanna, Ariane L Herrick
The episodic nature of Raynaud's phenomenon (RP) in systemic sclerosis (SSc) has led to a reliance on patient-reported outcome (PR..
Systematic review, and meta-analysis of steroid-sparing effect, of biologic agents in randomized, placebo-controlled phase 3 trials for systemic lupus erythematosus
Shereen Oon, Molla Huq, Timothy Godfrey, Mandana Nikpour
OBJECTIVES: To systematically review, and conduct a meta-analysis of steroid-sparing effect in, phase 3 randomized, placebo-contro..
Determinants of health-related quality of life in a multinational systemic sclerosis inception cohort.
Kathleen Morrisroe, Marie Hudson, Murray Baron, Jeska de Vries-Bouwstra, Patricia E Carreira, Dirk M Wuttge, Mianbo Wang, Tracy M Frech, Wendy Stevens, Susanna M Proudman, Mandana Nikpour, null International Systemic Sclerosis Inception Cohort (INSYNC) collaboration
OBJECTIVES: To evaluate health-related quality of life (HRQoL) and its determinants in a systemic sclerosis (SSc) multinational in..
The role of inflammatory markers in assessment of disease activity in systemic sclerosis.
Laura Ross, Wendy Stevens, Candice Rabusa, Michelle Wilson, Nava Ferdowsi, Jennifer Walker, Joanne Sahhar, Gene-Siew Ngian, Jane Zochling, Janet Roddy, Kathleen Tymms, Gabor Major, Gemma Strickland, Susanna M Proudman, Mandana Nikpour
OBJECTIVES: The role of the erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) in the assessment of disease activit..
Increased serum levels of adhesion molecules ICAM-1 and VCAM-1 in systemic sclerosis are not specific for pulmonary manifestations
Vivek Thakkar, Karen A Patterson, Wendy Stevens, Michelle Wilson, Janet Roddy, Joanne Sahhar, Susanna Proudman, Pravin Hissaria, Mandana Nikpour
Studies suggest elevated serum intercellular adhesion molecule-1 (ICAM-1) and vascular cell adhesion molecule-1 (VCAM-1) levels ma..
CD39 and CD73 activity are protective in a mouse model of antiphospholipid antibody-induced miscarriages
Anushka N Samudra, Karen M Dwyer, Carly Selan, Susanna Freddi, Lisa Murray-Segal, Mandana Nikpour, Michael J Hickey, Karlheinz Peter, Simon C Robson, Maithili Sashindranath, Peter J Cowan, Harshal H Nandurkar
OBJECTIVE: Antiphospholipid syndrome (APS) is a systemic autoimmune disorder of young adults associated with devastating pregnancy..
Longitudinal association of type 1 interferon-induced chemokines with disease activity in systemic lupus erythematosus
KL Connelly, R Kandane-Rathnayake, M Huq, A Hoi, M Nikpour, EF Morand
Type I interferon (IFN) pathways are significant in SLE pathogenesis. Less is known about the utility of measuring markers of IFN ..
EVOLVE: The Australian Rheumatology Association's "top five' list of investigations and interventions doctors and patients should question
Kathleen Morrisroe, Ayano Nakayama, Jason Soon, Mark Arnold, Les Barnsley, Claire Barrett, Peter M Brooks, Stephen Hall, Patrick Hanrahan, Pravin Hissaria, Graeme Jones, Veera S Katikireddi, Helen Keen, Rodger Laurent, Mandana Nikpour, Katherine Poulsen, Philip Robinson, Muriel Soden, Nigel Wood, Nicola Cook
BACKGROUND: The EVOLVE (evaluating evidence, enhancing efficiencies) initiative aims to drive safer, higher-quality patient care t..
Work productivity in systemic sclerosis, its economic burden and association with health-related quality of life
Kathleen Morrisroe, Vijaya Sudararajan, Wendy Stevens, Joanne Sahhar, Jane Zochling, Janet Roddy, Susanna Proudman, Mandana Nikpour
Objective: To evaluate work productivity and its economic burden in SSc patients. Methods: Consecutive SSc patients enrolled in th..
Quantifying the direct public health care cost of systemic sclerosis A comprehensive data linkage study
Kathleen Morrisroe, Wendy Stevens, Joanne Sahhar, Gene-Siew Ngian, Candice Rabusa, Nava Ferdowsi, Catherine Hill, Susanna Proudman, Mandana Nikpour
To quantify the direct healthcare cost of systemic sclerosis (SSc) and identify its determinants. Healthcare use was captured thro..
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..
Validity of the PROMIS-29 in a large Australian cohort of patients with systemic sclerosis
Kathleen Morrisroe, Wendy Stevens, Molla Huq, Joanne Sahhar, Gene-Siew Ngian, Jane Zochling, Janet Roddy, Susanna Proudman, Mandana Nikpour
Background: We aimed to evaluate the construct validity of the Patient-Reported Outcomes Measurement Information System 29 (PROMIS..
What have multicentre registries across the world taught us about the disease features of systemic sclerosis?
Susanna M Proudman, Molla Huq, Wendy Stevens, Michelle E Wilson, Joanne Sahhar, Murray Baron, Marie Hudson, Janet Pope, Yannick Allanore, Oliver Distler, Otylia Kowal-Bielecka, Marco Matucci-Cerinic, Andrea HL Low, Gim Gee Teng, Weng Giap Law, Amelia Santosa, Mandana Nikpour
Introduction: The aim of this study is to compare the clinical features, mortality and causes of death of systemic sclerosis (SSc)..
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..
Antifibrillarin Antibodies Are Associated with Native North American Ethnicity and Poorer Survival in Systemic Sclerosis
Carolina Mejia Otero, Shervin Assassi, Marie Hudson, Maureen D Mayes, Rosa Estrada-Y-Martin, Claudia Pedroza, Tingting W Mills, Jennifer Walker, Murray Baron, Wendy Stevens, Susanna M Proudman, Mandana Nikpour, Sonal Mehra, Mianbo Wang, Marvin J Fritzler
OBJECTIVE: To examine the clinical correlates and survival in patients with antifibrillarin antibodies (AFA) in a large internatio..
Does expert opinion match the operational definition of the Lupus Low Disease Activity State (LLDAS)? A case-based construct validity study
Vera Golder, Molla Huq, Kate Franklyn, Alicia Calderone, Aisha Lateef, Chak Sing Lau, Alfred Lok Hang Lee, Sandra Teresa V Navarra, Timothy Godfrey, Shereen Oon, Alberta Yik Bun Hoi, Eric Francis Morand, Mandana Nikpour
OBJECTIVE: To evaluate the construct validity of the Lupus Low Disease Activity State (LLDAS), a treatment target in systemic lupu..
Early accrual of organ damage in systemic sclerosis: rationale for development of a disease damage index
Tien Tay, Molla Huq, Nava Ferdowsi, Wendy Stevens, Joanne Sahhar, Gene-Siew Ngian, Janet Roddy, Jane Zochling, Jenny Walker, Susanna M Proudman, Mandana Nikpour
Introduction: Systemic sclerosis (SSc) is characterized by irreversible organ damage rather than fluctuating disease activity. How..
Early Mortality in a Multinational Systemic Sclerosis Inception Cohort
Yanjie Hao, Marie Hudson, Murray Baron, Patricia Carreira, Wendy Stevens, Candice Rabusa, Solene Tatibouet, Loreto Carmona, Beatriz E Joven, Molla Huq, Susanna Proudman, Mandana Nikpour
OBJECTIVE: To determine mortality and causes of death in a multinational inception cohort of subjects with systemic sclerosis (SSc..
Long-term efficacy and tolerability of mycophenolate mofetil therapy in diffuse scleroderma skin disease
Daniel Boulos, Gene-Siew Ngian, Anton Rajadurai, Kathleen Elford, Wendy Stevens, Susanna Proudman, Claire Owen, Janet Roddy, Mandana Nikpour, Peter Youssef, Catherine Hill, Joanne Sahhar
OBJECTIVES: To assess the long-term efficacy and tolerability of mycophenolate mofetil (MMF) in patients with diffuse cutaneous sy..
Association of the lupus low disease activity state (LLDAS) with health-related quality of life in a multinational prospective study
Vera Golder, Rangi Kandane-Rathnayake, Alberta Yik-Bun Hoi, Molla Huq, Worawit Louthrenoo, Yuan An, Zhan Guo Li, Shue Fen Luo, Sargunan Sockalingam, Chak Sing Lau, Mo Yin Mok, Aisha Lateef, Kate Franklyn, Susan Morton, Sandra Teresa V Navarra, Leonid Zamora, Yeong-Jian Wu, Laniyati Hamijoyo, Madelynn Chan, Sean O'Neill
BACKGROUND: Systemic lupus erythematosus (SLE) is associated with significant impairment of health-related quality of life (HR-QoL..
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..
Validity of the Workers Productivity and Activity Impairment Questionnaire: Specific Health Problem (WPAI:SHP) in patients with systemic sclerosis
K Morrisroe, W Stevens, M Huq, J Sahhar, G-S Ngian, J Zochling, J Roddy, SM Proudman, M Nikpour
OBJECTIVES: To evaluate the construct validity of the Workers Productivity and Impairment Activity Index: Specific Health Problem ..