The Neuroendocrine Tumour Interest group is concerned with the management of neuroendocrine tumours. Neuroendocrine tumours (NETs) are composed of neuroendocrine cells, which are cells that produce and secrete regulatory hormones and are present throughout the nervous and endocrine/hormonal systems. As neuroendocrine cells are distributed widely throughout the body, tumours of these cells can occur at many sites. Neuroendocrine tumours occur most commonly in the digestive system but can occur in other parts of the body.
These are uncommon tumours that have many unusual features. This makes optimal and standardised management a challenge. Management of these rare tumours is also compounded by limited access to many emerging investigations and treatments.
COSA has coordinated a number of workshops to discuss the management of NETs in Australia. From these workshops a number of projects have been committed, including:
- facilitating the set up of state based cross institutional NETs multidisciplinary networks, initially to be piloted in several states
- development of a national NETs database and tumour registry
- development of NETs specific clinical trials
- development of Australian guidelines for NETs management
2008 Neuroendocrine Tumour workshop report (pdf, 219kb)
An exciting NETs development is the launch of the SIGNETURe registry. This initiative was formally announced by Dr Yu Jo Chua during the 2010 COSA Annual Scientific Meeting in Melbourne.
COSA is pleased to sponsor this new patient registry which is supported by Ipsen. The NETs SAC and COSA will oversee the data entry and administration aspects of the registry; Ipsen will have no access to the data or representation on the Scientific Advisory Committee.
The database has been developed with significant input from local physicians, in particular lead investigator and study chair, Dr Tim Price. It is a web based system hosted by eCRF provider Datatrak and requires no custom software. Links are provided below to the netsig website and SIGNETURe login page (user name and password required).
www.netsig.com.au
www.netsig.com.au/login.htm
The NETs registry will facilitate the collection of retrospective and prospective data on patients with neuroendocrine tumours. Greater understanding of the trends in diagnosis and treatment of NETS, as well as the evaluation of long term outcomes will help optimise the clinical care for patients with these rare tumours.
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.
