Continuation of ASIG database extrapolation –  

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.