SIGNETURe Registry

Dr Yu Jo Chua launched the “Specialist Interest Group in NET Unique Registry” (SIGNETURe) during the 2010 COSA Annual Scientific Meeting in Melbourne. COSA is pleased to sponsor this patient registry and thanks Ipsen for financial support.  The NETs Scientific Advisory Committee (SAC) and COSA oversee the data entry and administration aspects of the registry; Ipsen have no access to the data or representation on the SAC.

The registry was developed with significant input from local physicians, in particular lead investigator and SAC chair, Associate Professor Tim Price.  It will allow the collection of retrospective and prospective data on patients with NETs in Australia.  The registry will facilitate greater understanding of the trends in diagnosis and treatment of NETS, as well as the evaluation of long-term patient outcomes. This will help optimise the clinical care for patients with these rare tumours.

The number of sites participating in the registry is growing with ethics approval at three sites in South Australia (Queen Elizabeth Hospital, Royal Adelaide Hospital, and Flinders Medical Centre), three in NSW (St George Hospital, Royal North Shore Hospital, and Prince of Wales Hospital), one in the ACT (The Canberra Hospital) and one in Victoria (Peter MacCallum Cancer Centre).  An ethics application remains under consideration in Western Australia (Sir Charles Gairdner Hospital) and the registry is open to additional sites.

We thank Ipsen for their ongoing support with the NETs registry.  COSA also welcomes participation from other industry partners and contributions to assist with the funding of data entry.