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Scleroderma Australia Inc.,
C/- St. Vincent's Hospital,
47 Victoria Parade,

Telephone: 02 9990 5159

Scleroderma Research

2019 Research Program

1. Implementation and feasibility testing of the new Australian Scleroderma Interest Group algorithm for pulmonary arterial hypertension screening.

 ASIG has published a new screening algorithm for PAH screening in scleroderma to allow early detection of this serious complication and initiation of life-saving therapy. This new algorithm incorporates a blood test for NT-proBNP and lung function tests as the first step in screening, shifting the focus away from echocardiography of the heart which may not be accessible to all patients.

In this project, we propose to implement the algorithm in rheumatology practices in Queensland that fall within the catchment area of 4 major hospitals in Brisbane, to which patients who screen positive can then be referred for further evaluation.

If the new screening algorithm is shown to be feasible for roll-out in the community, the case for the listing of NT-proBNP on the Medicare Benefits Schedule will be strengthened.

The budget for this project includes annual NT-proBNP testing in approximately 500 patients with scleroderma over 3 years (each test at a cost of $60), and a 0.8 FTE project coordinator. Total budget: $170,000.

Scleroderma Australia will commit $25,000 to this project

2. Development of an ASIG position statement on Autologous Stem Cell Transplantation (ASCT) in scleroderma.

Stem cell bone marrow transplantation is currently in the spotlight as a potential new treatment for scleroderma. However, the selection of suitable patients and the use of optimal conditioning regimens requires further investigation, in order to minimise the risk of complications and mortality.

In this project, we propose to assemble a Working Group of ASIG in order to identify Australian centres currently performing ASTC in scleroderma, consider which patients are most likely to benefit from this therapy, discuss the specifics of transplantation with haematologist experts, review the outcomes of ASCT in Australian patients, and ultimately draft a position statement on the place of ASCT in the management of Australian scleroderma patients.

The budget for this project includes Working Group meetings, and a project leader. Total budget: $25,000.

Scleroderma Australia Inc. have fully funded this Project

Scleroderma Survey

We are still in the process of recruiting informal caregivers to persons with Scleroderma to participate in our informal Caregiver's of People Living with Scleroderma Survey.

We are hoping to obtain additional responses from eligible participants before closing this survey, and if possible I'm hoping to get
your help one last time promoting this survey! Please see the recruitment advertisement link below.

Survey Recruitment Advertisement Informal Caregivers

Australian Scleroderma Interest Group

The Australian Scleroderma Interest Group (ASIG) undertakes research projects into scleroderma.

ASIG would like to thank patients and their families who have generously donated to the ASIG research program.

Donations to the ASIG research program are used to:

  • Fund blood sample research which we hope will help to explain why some people develop the serious complications associated with scleroderma - $30 would cover the cost of one sample
  • Maintain the national database, a vital part of rare disease research - $250 would provide the hardware to link one researcher to the online database
  • Contribute to a scholarship for a PhD student - Rheumatology Consultants or Registrars who choose a career in research undertake a three year research degree. ASIG is committed to sponsoring one student per year who is interested in focusing on scleroderma and contributing to a better understanding of this rare disease.

Tax deductible donations to Australian Scleroderma Interest Group can be made to:
St Vincent's Foundation
BSB: 082 057
Account no.: 147 436 626
Reference: scleroderma


Australian Scleroderma Interest Group Newsletters