SwissNET - a Prospective Registry of Patients With Neuroendocrine Tumours in Switzerland
Background
Gastroentero-pancreatic neuroendocrine tumours (GEP-NETs) are generally classified as rare
diseases. Little is known about their cell biology and their mechanistic regulation. During
the last years, the incidence of GEP-NETs is continuously increasing worldwide. In parallel,
novel treatment options are currently evaluated which may substantially improve prognosis of
patients with NETs. Data on such tumours in Switzerland, however, is scarce and treatment
strategies vary throughout the country.
Objective
To systematically and prospectively collect clinical information of patients with GEP-NETs
in Switzerland based on a histologically confirmed diagnosis.
Methods
All NETs of both, gastrointestinal and pulmonary origin are included provided that patients
have given informed consent. Data will be entered prospectively and anonymised in a
specifically designed database. Contributing centres and general practitioners are visited
by a study nurse, patient files are analysed and data is transferred to the database. In
case of conflicting evidence, questions are resolved in collaboration with a review board of
SwissNET. Evaluation of treatment modalities and patient outcomes (e.g. mortality,
hospitalisation rate) will take place within regular time frames.
Observational
Observational Model: Cohort, Time Perspective: Prospective
Tumor-related mortality
Every 5 years
No
Aurel Perren, MD
Study Director
Institute of Pathology, University of Bern, Bern
Switzerland: Federal Office of Public Health (Bundesamt fuer Gesundheit)
BAG 035.0002-20/19
NCT01039922
January 2008
January 2028
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