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Brief Title: SwissNET - a Registry for Neuroendocrine Tumours in Switzerland
Official Title: SwissNET - a Prospective Registry of Patients With Neuroendocrine Tumours in Switzerland
Study ID: NCT01039922
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.
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.
Minimum Age:
Eligible Ages: CHILD, ADULT, OLDER_ADULT
Sex: ALL
Healthy Volunteers: No
Kantonsspital Aarau, Aarau, , Switzerland
Spitalnetz Bern Aarberg, Aarberg, , Switzerland
Bezirksspital Affoltern, Affoltern am Albis, , Switzerland
Kantonsspital Uri, Altdorf, Altdorf, , Switzerland
St. Claraspital, Basel, , Switzerland
Universitätsspital Basel, Basel, , Switzerland
Istituto oncologico della Svizzera italiana, Bellinzona, , Switzerland
Div. of Endocrinology, Diabetes and Clinical Nutrition, Bern University Hospital, Bern, , Switzerland
Spital Tiefenau, Spitalnetz Bern, Bern, , Switzerland
Zieglerspital Bern, Bern, , Switzerland
Spitalzentrum Biel - Bienne, Biel, , Switzerland
Kantonsspital Bruderholz, Bruderholz, , Switzerland
Regionsspital Emmental, Burgdorf, , Switzerland
Private practise Dr. Mannhart, Churwalden, , Switzerland
Kantonsspital Chur, Chur, , Switzerland
Hôpital du Jura, Delémont, , Switzerland
Spital Dornach, Dornach, , Switzerland
Regionalspital Einsiedeln, Einsiedeln, , Switzerland
Hôpitaux Universitaires de Genève, Geneva, , Switzerland
Spital Grabs, Grabs, , Switzerland
See-Spital Horgen, Horgen, , Switzerland
Spital Zimmerberg, Horgen, , Switzerland
Fmi Spital Interlaken, Interlaken, , Switzerland
Spital Lachen, Lachen, , Switzerland
Spital Region Oberaargau, Langenthal, , Switzerland
Kantonsspital Laufen, Laufen, , Switzerland
Centre hospitalier universitaire vaudois, CHUV, Lausanne, , Switzerland
Kantonsspital Liestal, Liestal, , Switzerland
Hirslandenklinik St. Anna, Luzern, , Switzerland
Kantonsspital Luzern, Luzern, , Switzerland
Kantonsspital Sursee, Luzern, Luzern, , Switzerland
Kreisspital Männedorf, Männedorf, , Switzerland
Kantonsspital Münsterlingen, Münsterlingen, , Switzerland
Kantonsspital Olten, Olten, , Switzerland
Gesundheitszentrum Fricktal, Rheinfelden, , Switzerland
Kantonsspital Obwalden, Sarnen, , Switzerland
Spital Limmattal, Schlieren, , Switzerland
Spital Schwyz, Schwyz, , Switzerland
Privatpraxis Dr. H.J. Poths, Seuzach, , Switzerland
Centre hospitalier du centre du Valais, Sion, , Switzerland
Bürgerspital Solothurn, Solothurn, , Switzerland
Kantonsspital St. Gallen, St. Gallen, , Switzerland
Kantonsspital Nidwalden, Stans, , Switzerland
Thun Spital STS AG, Thun, , Switzerland
Spital Uster, Uster, , Switzerland
Regionalspital Visp, Visp, , Switzerland
Kantonsspital Winterthur, Winterthur, , Switzerland
Kantonsspital Wolhusen, Wolhusen, , Switzerland
Spital Zollikerberg, Zollikerberg, , Switzerland
Zuger Kantonsspital AG, Zug, , Switzerland
STS AG Spital Zweisimmen, Zweisimmen, , Switzerland
Pathologie Medica Zürich, Zürich, , Switzerland
Stadtspital Triemli, Zürich, , Switzerland
Stadtspital Waid, Zürich, , Switzerland
Universitätsspital Zürich, Zürich, , Switzerland
Name: Aurel Perren, MD
Affiliation: Institute of Pathology, University of Bern, Bern
Role: STUDY_DIRECTOR