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

January 20, 2020 updated by: University Hospital Inselspital, Berne

SwissNET - a Prospective Registry of Patients With Neuroendocrine Tumours in Switzerland

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.

Study Overview

Status

Recruiting

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.

Study Type

Observational

Enrollment (Anticipated)

1245

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Contact

Study Contact Backup

Study Locations

      • Aarau, Switzerland
        • Recruiting
        • Kantonsspital Aarau
      • Aarberg, Switzerland
        • Recruiting
        • Spitalnetz Bern Aarberg
      • Affoltern am Albis, Switzerland
        • Recruiting
        • Bezirksspital Affoltern
      • Altdorf, Switzerland
        • Recruiting
        • Kantonsspital Uri, Altdorf
      • Basel, Switzerland
        • Recruiting
        • Universitatsspital Basel
      • Basel, Switzerland
        • Recruiting
        • St. Claraspital
      • Bellinzona, Switzerland
        • Recruiting
        • Istituto Oncologico della Svizzera Italiana
      • Bern, Switzerland, 3010
        • Recruiting
        • Div. of Endocrinology, Diabetes and Clinical Nutrition, Bern University Hospital
      • Bern, Switzerland
        • Recruiting
        • Spital Tiefenau, Spitalnetz Bern
      • Bern, Switzerland
        • Recruiting
        • Zieglerspital Bern
      • Biel, Switzerland
        • Recruiting
        • Spitalzentrum Biel - Bienne
      • Bruderholz, Switzerland
        • Recruiting
        • Kantonsspital Bruderholz
      • Burgdorf, Switzerland
        • Recruiting
        • Regionsspital Emmental
      • Chur, Switzerland
        • Recruiting
        • Kantonsspital Chür
      • Churwalden, Switzerland
        • Recruiting
        • Private practise Dr. Mannhart
      • Delémont, Switzerland
        • Recruiting
        • Hopital du Jura
      • Dornach, Switzerland
        • Recruiting
        • Spital Dornach
      • Einsiedeln, Switzerland
        • Recruiting
        • Regionalspital Einsiedeln
      • Geneva, Switzerland
        • Recruiting
        • Hopitaux Universitaires de Geneve
      • Grabs, Switzerland
        • Recruiting
        • Spital Grabs
      • Horgen, Switzerland
        • Recruiting
        • See-Spital Horgen
      • Horgen, Switzerland
        • Recruiting
        • Spital Zimmerberg
      • Interlaken, Switzerland
        • Recruiting
        • Fmi Spital Interlaken
      • Lachen, Switzerland
        • Recruiting
        • Spital Lachen
      • Langenthal, Switzerland
        • Recruiting
        • Spital Region Oberaargau
      • Laufen, Switzerland
        • Recruiting
        • Kantonsspital Laufen
      • Lausanne, Switzerland
        • Recruiting
        • Centre Hospitalier Universitaire Vaudois, CHUV
      • Liestal, Switzerland
        • Recruiting
        • Kantonsspital Liestal
      • Luzern, Switzerland
        • Recruiting
        • Kantonsspital Luzern
      • Luzern, Switzerland
        • Recruiting
        • Hirslandenklinik St. Anna
      • Luzern, Switzerland
        • Recruiting
        • Kantonsspital Sursee, Luzern
      • Männedorf, Switzerland
        • Recruiting
        • Kreisspital Männedorf
      • Münsterlingen, Switzerland
        • Recruiting
        • Kantonsspital Münsterlingen
      • Olten, Switzerland
        • Recruiting
        • Kantonsspital Olten
      • Rheinfelden, Switzerland
        • Recruiting
        • Gesundheitszentrum Fricktal
      • Sarnen, Switzerland
        • Recruiting
        • Kantonsspital Obwalden
      • Schlieren, Switzerland
        • Recruiting
        • Spital Limmattal
      • Schwyz, Switzerland
        • Recruiting
        • Spital Schwyz
      • Seuzach, Switzerland
        • Recruiting
        • Privatpraxis Dr. H.J. Poths
      • Sion, Switzerland
        • Recruiting
        • Centre Hospitalier du Centre du Valais
      • Solothurn, Switzerland
        • Recruiting
        • Bürgerspital Solothurn
      • St. Gallen, Switzerland
        • Recruiting
        • Kantonsspital St. Gallen
      • Stans, Switzerland
        • Recruiting
        • Kantonsspital Nidwalden
      • Thun, Switzerland
        • Recruiting
        • Thun Spital STS AG
      • Uster, Switzerland
        • Recruiting
        • Spital Uster
      • Visp, Switzerland
        • Recruiting
        • Regionalspital Visp
      • Winterthur, Switzerland
        • Recruiting
        • Kantonsspital Winterthur
      • Wolhusen, Switzerland
        • Recruiting
        • Kantonsspital Wolhusen
      • Zollikerberg, Switzerland
        • Recruiting
        • Spital Zollikerberg
      • Zug, Switzerland
        • Recruiting
        • Zuger Kantonsspital AG
      • Zweisimmen, Switzerland
        • Recruiting
        • STS AG Spital Zweisimmen
      • Zürich, Switzerland
        • Recruiting
        • Universitätsspital Zürich
      • Zürich, Switzerland
        • Recruiting
        • Pathologie Medica Zürich
      • Zürich, Switzerland
        • Recruiting
        • Stadtspital Triemli
      • Zürich, Switzerland
        • Recruiting
        • Stadtspital Waid

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • ADULT
  • OLDER_ADULT
  • CHILD

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

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.

Description

Inclusion Criteria:

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

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Cohorts and Interventions

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

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
Tumor-related mortality
Time Frame: Every 5 years
Every 5 years

Secondary Outcome Measures

Outcome Measure
Time Frame
Incidence of GEP-NET in Switzerland
Time Frame: Every 5 years
Every 5 years
Effect of specific treatment strategies
Time Frame: Every 5 years
Every 5 years

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

January 1, 2008

Primary Completion (ANTICIPATED)

January 1, 2028

Study Completion (ANTICIPATED)

January 1, 2028

Study Registration Dates

First Submitted

December 24, 2009

First Submitted That Met QC Criteria

December 24, 2009

First Posted (ESTIMATE)

December 25, 2009

Study Record Updates

Last Update Posted (ACTUAL)

January 23, 2020

Last Update Submitted That Met QC Criteria

January 20, 2020

Last Verified

January 1, 2020

More Information

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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