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2017 Research Program

Assoc. Prof  Peter Yousef  - Department of Rheumatology, Royal Prince Alfred Hospital 

Subject: The utility of biomarkers of interstitial lung disease in systemic sclerosis

 

Over 1700 patients have contributed their data and biosamples annually to the ASIG database, many for several years. The ASIG database is now an invaluable resource for researching the multiple facets of scleroderma.

 

Various infrastructure components are integral to maximising the use of the database in terms of maintenance, cleaning and analysis of the data for ASIG’s research studies. I have listed the major components and the annual costs of maintaining them in the list below:

 

1. Project and data management (1.0 FTE): $85 575

· Managing patient reported outcome questionnaires

· Data cleaning and quality assurance, chasing missing data

· Exporting data for analysis

· Database maintenance and upgrade

· Ethics applications and annual reports

· Budgeting and financial management

· Governance eg record of membership, meeting activities etc

2. Study design and data analysis (0.6FTE biostatistican) $70,135

· Statistical analysis

· Data linkage

3. Direct research costs $20 000

· Handling, transport and storage of serum and DNA samples

To date, ASIG has been fortunate to receive funds from pharmaceutical companies that have covered the majority of the annual costs but unfortunately, these funds have been reduced in 2016. A substantial donation of $50 000 from Scleroderma Australia would ensure ASIG’s sustainability for 2017 and we would be enormously grateful if you were able to make such a donation.

I have listed various ASIG clinical research activities to highlight the range of studies we are currently undertaking and hope to continue in the event of obtaining sufficient funds.

* Prospective validation of the new ASIG PAH screening algorithm

* Burden of Disease program – data linkage, patient-reported outcomes, SSc-PAH survival, work disability

* Development of the systemic sclerosis damage index (SSc-DI) and disease activity index (SSc-DA)

* Genetics of systemic sclerosis

* The utility of biomarkers of interstitial lung disease in systemic sclerosis

* Predicting fibrosis progression in systemic sclerosis

* Incidence and prevalence of muscle disease in systemic sclerosis

* FCGR3B genetic copy number variation in systemic sclerosis

* Anti-fibrillarin autoantibodies in systemic sclerosis

* The association of hypocomplementemia with disease activity in systemic sclerosis

* The clinical relevance of ANCA in systemic sclerosis

* VCAM1 as a therapeutic target in scleroderma

Once again, we thank you for your generous support to date and look forward to a continued collaboration.