DNET

DNET Registry

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.

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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. The informed consent can be found on the right side of this page.

Digestive Neuro-Endocrine Tumours (DNET) are rare and imperfectly understood tumours. The estimated incidence is about 2.5 - 5 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.

Registry goals:

  • 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 digestive neuro-endocrine tumors. De data collected in this database is integrated in the database of the European neuroendocrine tumor society.

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.

This project cannot be a success without you, but also our partnership with the pharmaceutical companies, i.e. AAA, 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 (Micheline Stempin or Ine Debruyne). She will help you and explain how to proceed (approval by your local ethical commitee is mandatory, a new password will be assigned that is different from the password of the BGDO website).

Trial Status Recruiting
Phase Registry
Type of cancer Digestive Neuroendocrine Tumors
Study design

The data capture of the registry is web-based. A scientific committee grouping some BGDO members created an interactive registry. 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.

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.
Inclusion Main criteria
  • Subjects with a digestive neuroendocrine tumor.
  • Subjects must provide written informed consent prior the introduction of the data in the register
  • Male or female subjects aged older than 18 years
  • Subjects must be able to understand the register, accept that data about their pathology and treatment are introduced in the register and used for further statistical review and research.
Exclusion Main criteria

Subjects refusing to participate to the DNET register.

Treatment schedule

Not defined by the protocol

Study Period

Date of beginning of Registry: 17 January 2011; Date of end of Registry: 31 December 2019;

Study Coordinators

Ivan Borbath - Cliniques Universitaires Saint Luc - Brussels

Participating Groups

BGDO

Participating centres

UZ Leuven - S. Tejpar Algemene Kliniek St.-Jan - Brussel - Dr. P. Van Maele AZ Damiaan - Oostende - Dr. G. Deboever AZ KLINA - Brasschaat - Dr. W. Demey AZ Maria Middelares - Gent - Dr. E. Monsaert AZ Sint Jozef - Malle - Dr. W. Demey AZ Sint Maarten - Mechelen - Dr. M. Ferrante AZ St Jan AV - Brugge - Dr. A. Bols AZ St-Jan - Brugge - Dr. J. Arts C.H.U. Sart-Tilman - Liège - Dr. M. Polus CHPLT - Verviers - Dr. Hassan Kalantari Cliniques Universitaires Saint Luc - Brussels - Prof. Y Humblet H.-Hartziekenhuis vzw Roeselare-Menen - Dr. G. Ghillebert Sint Augustinusziekenhuis - Wilrijk - Dr. F. Van de Mierop Sint-Jozefkliniek Bornem-Willebroek - Bornem - Dr. T. Rondou St Elisabeth Ziekenhuis - Turnhout - Dr. J. Janssens ULB Erasme - Brussels - Dr. A. Demols UMT site RHMS/CHWAPI Tournai - Dr. K. Kargar Samani UZ Antwerpen - Prof. M. Peeters UZ Gent - Dr. S. Laurent

Protocol summary Link to ClinicalTrials.gov
NCT number
EudraCT
Interest to participate clinicaltrials@bgdo.org
More info clinicaltrials@bgdo.org