Maryam Tabesh, St Vincent’s Hospital Melbourne, maryam.tabesh@svha.org.au
Scleroderma is a multisystem disease of unknown aetiology which has the highest disease-related morbidity and mortality of the autoimmune rheumatic diseases. The Australian Scleroderma Interest Group (ASIG) is a national collaboration of rheumatologists, with a special interest in improving the outcomes of patients with scleroderma.
ASIG established the ASCS, a longitudinal observational cohort that provides a framework for clinical and laboratory research enabling collaborations with other Australian researchers and internationally.
The primary objective of the ASCS is to enhance clinical care by increasing the rate of screening for scleroderma-related cardiopulmonary complications to allow earlier identification of patients at high risk, and institution of timely treatment. Other objectives include:
- Contribution to research into predisposing factors for serious complications
- National data linkage to quantify burden of disease and disease outcomes
- Contribution to an understanding of the most effective treatments
- Foster research in systemic sclerosis among early career rheumatologists and advanced trainee
- Reported in other public reports
- Shared with clinicians
- Shared with consumers
- Scleroderma Health Assessment Questionnaire (sHAQ)
- General Health Assessment Questionnaire (HAQ)
- Short Form 36 (SF-36)
- PROMIS-29 Profile 2.0
- UCLA Scleroderma Clinical Trial Consortium Gastrointestinal Tract (UCLA SCTC GIT 2.0)
- Instrument
- Functional Assessment of Chronic Illness Therapy (FACIT)
Nil
Australian Capital Territory
- Canberra Hospital
New South Wales
- John Hunter Hospital
- Royal Prince Alfred Hospital
South Australia
- Royal Adelaide Hospital
Victoria
- Monash Medical Centre
- St. Vincent’s Hospital Melbourne
Western Australia
- Fiona Stanley Hospital
- Royal Perth Hospital
Tasmania
- Hobart Private Hospital
Under development