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SwissNET - a Registry for Neuroendocrine Tumours in Switzerland (SwissNET)

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ClinicalTrials.gov Identifier: NCT01039922
Recruitment Status : Recruiting
First Posted : December 25, 2009
Last Update Posted : April 19, 2017
Information provided by (Responsible Party):

Study Description
Brief Summary:
Gastroentero-pancreatic neuroendocrine tumours (GEP-NETs) are regarded as a fairly rare disease. They are derived from the neuroendocrine system of the gastrointestinal tract and the pancreas and share common clinical features. So far, there is still uncertainty about the cell biology and mechanistic regulation of these tumours. Therefore targeted treatment is limited and management challenging. Treatment options include surgery, medical and ablative therapy, and more recently peptide-receptor radionuclide therapy. In order to better understand the characteristics of GEP-NETs and to evaluate treatment strategies, the SwissNET registry aims at the collection of data from patients presenting with a GEP-NET in Switzerland. Data will be entered prospectively and anonymized in a specifically designed database after the patient has given informed consent. All hospitals and general practitioners are invited to report on patients with a GEP-NET diagnosis and to participate to the registry. Data will be evaluated within regular time frames, focussing on types of GEP-NETs, treatment modalities and patient outcomes (e.g. mortality, hospitalisation rate), thereby contributing to the better understanding of these tumours.

Condition or disease
Neuroendocrine Tumors Carcinoid Tumor

Detailed Description:


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.


To systematically and prospectively collect clinical information of patients with GEP-NETs in Switzerland based on a histologically confirmed diagnosis.


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.

Study Design

Study Type : Observational
Estimated Enrollment : 1245 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: SwissNET - a Prospective Registry of Patients With Neuroendocrine Tumours in Switzerland
Study Start Date : January 2008
Estimated Primary Completion Date : January 2028
Estimated Study Completion Date : January 2028

Resource links provided by the National Library of Medicine

U.S. FDA Resources

Groups and Cohorts

Patients with a histologically confirmed diagnosis of a neuroendocrine tumor irrespective of primary tumor location or of a merkel cell carcinoma.

Outcome Measures

Primary Outcome Measures :
  1. Tumor-related mortality [ Time Frame: Every 5 years ]

Secondary Outcome Measures :
  1. Incidence of GEP-NET in Switzerland [ Time Frame: Every 5 years ]
  2. Effect of specific treatment strategies [ Time Frame: Every 5 years ]

Eligibility Criteria

Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Senior
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients will be selected either through the report of a pathological institute or of any medical doctor within Switzerland treating patients with neuroendocrine tumours.

Inclusion Criteria:

  • Neuroendocrine tumor irrespective of primary tumor location or merkel cell carcinoma
  • Diagnosis in Switzerland
  • Given informed consent
Contacts and Locations

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT01039922

Contact: Attila Kollàr, MD ++41 31 632 21 11 attila.kollar@insel.ch
Contact: Emanuel Christ, MD, PhD ++41 31 632 40 70 emanuel.christ@insel.ch

Div. of Endocrinology, Diabetes and Clinical Nutrition, Bern University Hospital Recruiting
Bern, Switzerland, 3010
Principal Investigator: Attila Kollàr, MD         
Sponsors and Collaborators
University Hospital Inselspital, Berne
Cantonal Hospital of St. Gallen
University Hospital, Basel, Switzerland
University Hospital, Geneva
University of Lausanne Hospitals
University of Zurich
Triemlispital Zurich
Spitalnetz Bern
Ente Ospedaliero Cantonale, Bellinzona
Luzerner Kantonsspital
Kantonsspital Liestal
Kantonsspital Graubuenden
Spital Limmattal Schlieren
Waid City Hospital, Zurich
Spital STS AG
Study Director: Aurel Perren, MD Institute of Pathology, University of Bern, Bern
More Information

Responsible Party: University Hospital Inselspital, Berne
ClinicalTrials.gov Identifier: NCT01039922     History of Changes
Other Study ID Numbers: BAG 035.0002-20/19
395/2014 ( Other Identifier: KEK )
First Posted: December 25, 2009    Key Record Dates
Last Update Posted: April 19, 2017
Last Verified: April 2017

Keywords provided by University Hospital Inselspital, Berne:
Neuroendocrine Tumors

Additional relevant MeSH terms:
Neuroendocrine Tumors
Carcinoid Tumor
Neuroectodermal Tumors
Neoplasms, Germ Cell and Embryonal
Neoplasms by Histologic Type
Neoplasms, Nerve Tissue
Neoplasms, Glandular and Epithelial