Development of the BioGrid Australia National Pituitary Disease Database — ASN Events

Development of the BioGrid Australia National Pituitary Disease Database (#315)

Carmela Caputo 1 , Leon Heffer 2 , Maureen Turner 2 , Ann McCormack 3 , Ee Mun Lim 4 , Warrick J Inder 5 , David Torpy 6 , Peter Colman 7
  1. Australian Pituitary Interest Group, Melbourne
  2. BioGrid Australia, Melbourne
  3. Australian Pituitary Interest Group, Sydney
  4. Australian Pituitary Interest Group, Perth
  5. Australian Pituitary Interest Group, Brisbane
  6. Australian Pituitary Interest Group, Adelaide
  7. Australian Pituitary Interest Group, Melbourne

There may be 23,000 cases of clinically relevant pituitary tumours (estimated 1 per 1000 population) in Australia. However Australia’s diverse fragmented medical systems and limited data gathering has been a major barrier to pituitary disease research.
Aim: To develop a pituitary disease database for clinical data collection that will enable national collaborative research using real-time data.
Methods: We developed the software for real time clinical use, with features for report and letter generation. Clinical data is stored at the treating institution and can be integrated for ethically approved research projects via BioGrid Australia’s federated data linkage platform. As data is not stored centrally, each site retains complete control over access to data.
Results: Development and testing of the clinical data collection software commenced in December 2011 and it is anticipated that installation will commence in June 2013. Following installation, over 2000 cases collected over 20 years at two centres (RMH & RAH) will be available for collaborative research. Ethical approval for data linkage to BioGrid Australia has been obtained at three sites (across 3 states) and approvals are pending at two further sites. Collaborative projects undertaken via BioGrid will need be agreed upon by a central committee of the Australian Pituitary Interest Group on a study-by-study basis.
Conclusion: Development of a national pituitary disease database will allow collaborators, both current and yet to be recruited, to pursue studies of pituitary disease and its treatment in substantial numbers of patients using a cost-effective and ethical framework. Funding of this collaborative development has been by donation from Novartis Pharmaceuticals.