Neuroendocrine TumorsSwissNETNCT01039922
SwissNET - a Registry for Neuroendocrine Tumours in Switzerland
An observational study of Neuroendocrine Tumors and Carcinoid Tumor, run by Insel Gruppe AG, University Hospital Bern at 55 sites in Switzerland.
Trial 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. Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Neuroendocrine Tumors, Carcinoid Tumor
- How many people
- 1,245 participants
- Where
- 55 sitesSwitzerland
- Study dates
- Jan 2008to 31 Aug 2025
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
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.
Who may be able to join
- Neuroendocrine tumor irrespective of primary tumor location
- Diagnosis in Switzerland
- Given informed consent
Who cannot join
None listed.
Trial locations and contacts
55 sites in 1 country.
55 sites in 1 country
Switzerland55 sites
Kantonsspital Aarau
Aarau
Spitalnetz Bern Aarberg
Aarberg
Bezirksspital Affoltern
Affoltern am Albis
Kantonsspital Uri, Altdorf
Altdorf
St. Claraspital
Basel
Universitätsspital Basel
Basel
Istituto oncologico della Svizzera italiana
Bellinzona
Div. of Endocrinology, Diabetes and Clinical Nutrition, Bern University Hospital
Bern, 3010
Spital Tiefenau, Spitalnetz Bern
Bern
Zieglerspital Bern
Bern
Spitalzentrum Biel - Bienne
Biel
Kantonsspital Bruderholz
Bruderholz
Regionsspital Emmental
Burgdorf
Kantonsspital Chur
Chur
Private practise Dr. Mannhart
Churwalden
Hôpital du Jura
Delémont
Spital Dornach
Dornach
Regionalspital Einsiedeln
Einsiedeln
Hôpitaux Universitaires de Genève
Geneva
Spital Grabs
Grabs
See-Spital Horgen
Horgen
Spital Zimmerberg
Horgen
Fmi Spital Interlaken
Interlaken
Spital Lachen
Lachen
Spital Region Oberaargau
Langenthal
Kantonsspital Laufen
Laufen
Centre hospitalier universitaire vaudois, CHUV
Lausanne
Kantonsspital Liestal
Liestal
Hirslandenklinik St. Anna
Lucerne
Kantonsspital Luzern
Lucerne
Kantonsspital Sursee, Luzern
Lucerne
Kreisspital Männedorf
Männedorf
Kantonsspital Münsterlingen
Münsterlingen
Kantonsspital Olten
Olten
Gesundheitszentrum Fricktal
Rheinfelden
Kantonsspital St. Gallen
Sankt Gallen
Kantonsspital Obwalden
Sarnen
Spital Limmattal
Schlieren
Spital Schwyz
Schwyz
Privatpraxis Dr. H.J. Poths
Seuzach Dorf
Centre hospitalier du centre du Valais
Sion
Bürgerspital Solothurn
Solothurn
Kantonsspital Nidwalden
Stans
Thun Spital STS AG
Thun
Spital Uster
Uster
Regionalspital Visp
Visp
Kantonsspital Winterthur
Winterthur
Kantonsspital Wolhusen
Wolhusen
Spital Zollikerberg
Zollikerberg
Zuger Kantonsspital AG
Zug
Pathologie Medica Zürich
Zurich
Stadtspital Triemli
Zurich
Stadtspital Waid
Zurich
Universitätsspital Zürich
Zurich
STS AG Spital Zweisimmen
Zweisimmen
About this study
Official title: 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.
Read the 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.
- Conditions
- Neuroendocrine Tumors, Carcinoid Tumor
- Keywords
- Neuroendocrine Tumors, Registries
- Medical subject headings
- Neuroendocrine Tumors, Carcinoid Tumor
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 1 | Patients with a histologically confirmed diagnosis of a neuroendocrine tumor irrespective of primary tumor location |
What is being measured
The primary outcome is the main question the study is designed to answer.
Tumor-related mortality
Measured: Every 5 years
Secondary outcomes (2)
Incidence of GEP-NET in Switzerland
Measured: Every 5 years
Effect of specific treatment strategies
Measured: Every 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted25 Dec 2009 (estimated)
- Study startJan 2008
- Primary completion31 Aug 2025
- Study completion31 Aug 2025
Why it stopped: The register will no longer be maintained on a prospective basis
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Neuroendocrine TumorsStudies of the same condition, open and under way.
- More trials run by Insel Gruppe AG, University Hospital BernThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 1,245 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Insel Gruppe AG, University Hospital Bern
- Sponsor type
- University, hospital or other
- Collaborators
- Cantonal Hospital of St. Gallen, University Hospital, Basel, Switzerland, University Hospital, Geneva, University of Lausanne Hospitals, University Hospital, Zürich, Triemlispital Zurich, Spitalnetz Bern, Ente Ospedaliero Cantonale, Bellinzona, Luzerner Kantonsspital, Kantonsspital Liestal, Kantonsspital Graubünden, Spital Limmattal Schlieren, Waid City Hospital, Zurich, Spital STS AG
- Responsible party
- Sponsor
- Investigators
- Aurel Perren, MD, Study director, Institute of Pathology, University of Bern, Bern
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT01039922
- Sponsor's protocol ID
- BAG 035.0002-20/19
- Other IDs
- 395/2014
- Acronym
- SwissNET
- Status last verified
- Sep 2026
- First submitted
- 24 Dec 2009
- Last updated
- 11 Sep 2026
- Results posted
- No
- Data monitoring committee
- No
Study at a glance
From the registry record, last updated by the sponsor on 11 Sep 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- SwissNET - a Prospective Registry of Patients With Neuroendocrine Tumours in Switzerland
- ClinicalTrials.gov ID
- NCT01039922
- Acronym / sponsor ID
- SwissNET / BAG 035.0002-20/19
- Conditions
- Neuroendocrine Tumors, Carcinoid Tumor
- Keywords
- Neuroendocrine Tumors, Registries
- Study type
- Observational
- Recruitment status
- TerminatedReason stopped: The register will no longer be maintained on a prospective basis
- Enrolment
- 1,245 participants (estimated)
- Lead sponsor
- Insel Gruppe AG, University Hospital BernUniversity, hospital or other
- Collaborators
- Cantonal Hospital of St. Gallen, University Hospital, Basel, Switzerland, University Hospital, Geneva, University of Lausanne Hospitals, University Hospital, Zürich, Triemlispital Zurich, Spitalnetz Bern, Ente Ospedaliero Cantonale, Bellinzona, Luzerner Kantonsspital, Kantonsspital Liestal, Kantonsspital Graubünden, Spital Limmattal Schlieren, Waid City Hospital, Zurich, Spital STS AG
- Study start
- Jan 2008
- Primary completion
- 31 Aug 2025 (actual)
- Study completion
- 31 Aug 2025 (actual)
- First posted
- 25 Dec 2009 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| 1 | – | –Patients with a histologically confirmed diagnosis of a neuroendocrine tumor irrespective of primary tumor location |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- 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.
Key inclusion criteria (3 listed)
- Neuroendocrine tumor irrespective of primary tumor location
- Diagnosis in Switzerland
- Given informed consent
Key exclusion criteria (0 listed)
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Tumor-related mortality
Time frame: Every 5 years
2 secondary outcomes
Incidence of GEP-NET in Switzerland
Time frame: Every 5 years
Effect of specific treatment strategies
Time frame: Every 5 years
Results and safety
The study was stopped early (reason given: The register will no longer be maintained on a prospective basis). Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 11 Sep 2026.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Aurel Perren, MD study director
Institute of Pathology, University of Bern, Bern
55 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Neuroendocrine Tumors and Carcinoid Tumor, run by Insel Gruppe AG, University Hospital Bern at 55 sites in Switzerland.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 0 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: stopped early, as of the sponsor's last update on 11 Sep 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 55 sites in Switzerland. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study was stopped early (reason given: The register will no longer be maintained on a prospective basis). Results are not available in the source record.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Tumor-related mortality (time frame: Every 5 years). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 11 Sep 2026.