BGDO | Belgian Group of Digestive Oncology

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DNET

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DNET

The Digestive Neuroendocrine Tumor registry is a registry to collect epidemiological and medicinal data of patients suffering from digestive neuro-endocrine tumours via an electronic database.

Digestive Neuro-Endocrine Tumours (DNET) are rare and imperfectly understood tumours. The estimated incidence is about 1-2 cases per 100,000 inhabitants and they constitute 2% of all gastrointestinal tumours. These neoplasms can modify amines and synthesize a variety of peptide hormones, which may lead to impressive clinical syndromes. These tumours are also characterized by a relatively slow tumour growth, but nevertheless have a malignant potential.

Diagnosis and treatment of these tumors have been significantly improved during the last decades. In Belgium, data are lacking regarding the epidemiology, current diagnostic and treatment practice. It was therefore felt that there was a need to collect data about the natural history, diagnosis, staging and treatment among the Belgian patient population.

The BGDO decided to promote the creation of a retrospective registry to offer physicians the possibility to create their own database of patients with DNET, and also to have a more general overview of the Belgian incidence of these rare neoplasms which may stimulate further research.

Registry objectives:

  • To have a better knowledge of the epidemiology of Digestive Neuroendocrine Tumors
  • To understand variations in treatment and treatment related outcomes
  • To assess efficacy of diagnostic techniques and therapeutic strategies
  • To monitor safety of new diagnostic approaches and therapies
  • To improve patient care through feedback of data by giving physicians guidance in diagnosis and treatment policy.

 

Methodology

The data capture of the registry is web-based. A scientific committee has been formed among BGDO members, and with the help of a database company, an interactive registry was created.
The DNET registry is open to all members of the BGDO interested in and following patients with DNETs. 
The scientific committee and the board of the BGDO strongly encourages all members of the BGDO to include new patients in order to reach the objectives of the registry.

The DNET was launched in spring 2005, nearly 6 years from now. Currently, 178 patients are included.

Because of a clear stop in recruitment, the registry needed to be redesigned and made more user friendly.Parallel to this, three members of the BGDO accepted to be the leaders of European NET registry, see www.enets.org. This very ambitious project is to be launched during 2011. For these two reasons, a working group re-built the registry, with a huge work performed by Damien Dresse that designed a new database. Warm thanks to him!

We have also evaluated the possibility of a financial help for each case included, but also for follow-up, as we believe this is also very important for helping you finding manpower to fill in the patient data. This new version of the very first scientific project of the BGDO will be showed at the Belgian Week of Gastroenterology in February 2011.

This project cannot be a success without you, but also our partnership with the pharmaceutical companies, i.e. Ipsen, Novartis and Pfizer, which we want to thank also for their support.

If you wish to participate to the DNET please contact the Clinical Study Coordinator of the BGDO Nathalie Verbist ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ). She will help you and explain how to proceed.