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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 : January 14, 2019
Sponsor:
Collaborators:
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
Information provided by (Responsible Party):
University Hospital Inselspital, Berne

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:

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.


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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


Group/Cohort
1
Patients with a histologically confirmed diagnosis of a neuroendocrine tumor irrespective of primary tumor location



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 ]


Information from the National Library of Medicine

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Ages Eligible for Study:   Child, Adult, Older Adult
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.
Criteria

Inclusion Criteria:

  • Neuroendocrine tumor irrespective of primary tumor location
  • Diagnosis in Switzerland
  • Given informed consent

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


Contacts
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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

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Locations
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Switzerland
Kantonsspital Aarau Recruiting
Aarau, Switzerland
Spitalnetz Bern Aarberg Recruiting
Aarberg, Switzerland
Bezirksspital Affoltern Recruiting
Affoltern am Albis, Switzerland
Kantonsspital Uri, Altdorf Recruiting
Altdorf, Switzerland
St. Claraspital Recruiting
Basel, Switzerland
Universitätsspital Basel Recruiting
Basel, Switzerland
Istituto oncologico della Svizzera italiana Recruiting
Bellinzona, Switzerland
Div. of Endocrinology, Diabetes and Clinical Nutrition, Bern University Hospital Recruiting
Bern, Switzerland, 3010
Principal Investigator: Attila Kollàr, MD         
Spital Tiefenau, Spitalnetz Bern Recruiting
Bern, Switzerland
Zieglerspital Bern Recruiting
Bern, Switzerland
Spitalzentrum Biel - Bienne Recruiting
Biel, Switzerland
Kantonsspital Bruderholz Recruiting
Bruderholz, Switzerland
Regionsspital Emmental Recruiting
Burgdorf, Switzerland
Private practise Dr. Mannhart Recruiting
Churwalden, Switzerland
Kantonsspital Chur Recruiting
Chur, Switzerland
Hôpital du Jura Recruiting
Delémont, Switzerland
Spital Dornach Recruiting
Dornach, Switzerland
Regionalspital Einsiedeln Recruiting
Einsiedeln, Switzerland
Hôpitaux Universitaires de Genève Recruiting
Geneva, Switzerland
Spital Grabs Recruiting
Grabs, Switzerland
See-Spital Horgen Recruiting
Horgen, Switzerland
Spital Zimmerberg Recruiting
Horgen, Switzerland
Fmi Spital Interlaken Recruiting
Interlaken, Switzerland
Spital Lachen Recruiting
Lachen, Switzerland
Spital Region Oberaargau Recruiting
Langenthal, Switzerland
Kantonsspital Laufen Recruiting
Laufen, Switzerland
Centre hospitalier universitaire vaudois, CHUV Recruiting
Lausanne, Switzerland
Kantonsspital Liestal Recruiting
Liestal, Switzerland
Hirslandenklinik St. Anna Recruiting
Luzern, Switzerland
Kantonsspital Luzern Recruiting
Luzern, Switzerland
Kantonsspital Sursee, Luzern Recruiting
Luzern, Switzerland
Kreisspital Männedorf Recruiting
Männedorf, Switzerland
Kantonsspital Münsterlingen Recruiting
Münsterlingen, Switzerland
Kantonsspital Olten Recruiting
Olten, Switzerland
Gesundheitszentrum Fricktal Recruiting
Rheinfelden, Switzerland
Kantonsspital Obwalden Recruiting
Sarnen, Switzerland
Spital Limmattal Recruiting
Schlieren, Switzerland
Spital Schwyz Recruiting
Schwyz, Switzerland
Privatpraxis Dr. H.J. Poths Recruiting
Seuzach, Switzerland
Centre hospitalier du centre du Valais Recruiting
Sion, Switzerland
Bürgerspital Solothurn Recruiting
Solothurn, Switzerland
Kantonsspital St. Gallen Recruiting
St. Gallen, Switzerland
Kantonsspital Nidwalden Recruiting
Stans, Switzerland
Thun Spital STS AG Recruiting
Thun, Switzerland
Spital Uster Recruiting
Uster, Switzerland
Regionalspital Visp Recruiting
Visp, Switzerland
Kantonsspital Winterthur Recruiting
Winterthur, Switzerland
Kantonsspital Wolhusen Recruiting
Wolhusen, Switzerland
Spital Zollikerberg Recruiting
Zollikerberg, Switzerland
Zuger Kantonsspital AG Recruiting
Zug, Switzerland
STS AG Spital Zweisimmen Recruiting
Zweisimmen, Switzerland
Pathologie Medica Zürich Recruiting
Zürich, Switzerland
Stadtspital Triemli Recruiting
Zürich, Switzerland
Stadtspital Waid Recruiting
Zürich, Switzerland
Universitätsspital Zürich Recruiting
Zürich, Switzerland
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
Investigators
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Study Director: Aurel Perren, MD Institute of Pathology, University of Bern, Bern

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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: January 14, 2019
Last Verified: January 2019
Keywords provided by University Hospital Inselspital, Berne:
Neuroendocrine Tumors
Registries
Additional relevant MeSH terms:
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Neuroendocrine Tumors
Carcinoid Tumor
Neoplasms
Neuroectodermal Tumors
Neoplasms, Germ Cell and Embryonal
Neoplasms by Histologic Type
Neoplasms, Nerve Tissue
Adenocarcinoma
Carcinoma
Neoplasms, Glandular and Epithelial