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NCT Number: NCT01039922

SwissNET - a Registry for 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.

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Key information

Conditions

Neuroendocrine Tumors Adenocarcinoma Carcinoid Tumor Carcinoma Neoplasms Neoplasms by Histologic Type Neoplasms, Germ Cell and Embryonal Neoplasms, Glandular and Epithelial Neoplasms, Nerve Tissue Neuroectodermal Tumors

Sex eligibility

All sexes

Study type

Observational

Primary location

Kantonsspital Aarau, Aarau, Switzerland

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About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

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

Treatment and study plan

Primary outcomes

  1. Tumor-related mortality

    Time frame: Every 5 years

Secondary outcomes

  1. Incidence of GEP-NET in Switzerland

    Time frame: Every 5 years

  2. Effect of specific treatment strategies

    Time frame: Every 5 years

Study contacts

Contact information is provided by the study sponsor or research team.

Alexander Siebenhuener, MD

CONTACT

[email protected]

++41 44 255 2214

Emanuel Christ, MD, PhD

CONTACT

[email protected]

++41 31 632 40 70

Sponsors and collaborators

Lead sponsor

Insel Gruppe AG, University Hospital Bern

Other

Collaborators

  • Cantonal Hospital of St. Gallen
  • Ente Ospedaliero Cantonale, Bellinzona
  • Kantonsspital Graubuenden
  • Kantonsspital Liestal
  • Luzerner Kantonsspital
  • Spital Limmattal Schlieren
  • Spital STS AG
  • Spitalnetz Bern
  • Triemlispital Zurich
  • University Hospital, Basel, Switzerland
  • University Hospital, Geneva
  • University Hospital, Zürich
  • University of Lausanne Hospitals
  • Waid City Hospital, Zurich

Registry information

Official study title

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

Acronym: SwissNET

Important dates

Study start
2008
Primary completion
2028
Study completion
2028
First posted
Dec 25, 2009
Registry last updated
Jan 23, 2020

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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