Neuro-endocrine tumors are rare and there is a wide range of treatment options available from a variety of medical specialties. For both these reasons, there is very little evidence in favour of one or the other treatment option. Even the published epidemiological data are likely to be unreliable. In December 2005, the interdisciplinary SwissNET Company was founded, including interests from various disciplines involved in this society, such as Surgery, Endocrinology, Oncology, Nuclear medicine, Pathology and Gastroenterology. The primary objective is to maintain a national register of neuroendocrine tumors, similar to existing ones in France and Germany. To inclusively register all patients in Switzerland, similar to the cantonal cancer registries, Swissnet requires the initial recognition of patients from the Pathology Institutes,the attending physicians and especially general practitioners. Therefore, the success of the registry depends on your cooperation.
From an ethical privacy perspective,the existing problems were resolved in the light of specific conditions. In February 2009 the BAG in all Swiss Cantons approved and issued a special permit to allow SwissNET to keep the registry. The purpose of the permit is: "All neuroendocrine tumors patient data may only serve to register the established authorized tumor types in SwissNET. It represents a continuous and systematic collection of data for analysis and interpretation of the same data in all patients diagnosed with neuroendocrine tumor in Switzerland. The register aims to provide the foundations for epidemiological studies of rare neuroendocrine tumors. "
With this approval, all doctors, clinics and institutions in Switzerland are granted permission to report the names and addresses of patients with neuroendocrine tumors to SwissNET and the family doctor to directly obtain the patient's consent for inclusion in the registry. The patients will be provided informed consent about their right to refuse inclusion in the registry. If the veto is exercised by patients,the patient's family doctor does not pass on their data to the SwissNET registry.
If the patients agree to inclusion, then any SwissNET-registry data, which are in connection with neuroendocrine tumors, and with the above-mentioned purpose, are transmitted to SwissNET or insight into the medical records is granted. Complete medical records, investigation reports, findings, etc. are not to be transmitted.
Thus, for the tumor registry to be successfully performed for neuroendocrine tumors, we need your support. The "Study nurse" employed by SwissNET will contact pathology institutes and primary care physicians for information.
For further questions please contact us at any time.
Prof. Dr. med. Emanuel Christ
c/o Dr. med. Attila Kollar
Universitätsklinik für Medizinische Onkologie
Inselspital, Universitätsklinik Bern
Simone Lanz und Christine Lueckl
Universitätsklinik für Diabetologie, Endokrinologie, Ernährungsmedizin und Metabolismus (UDEM)
Inselspital, Universitätsspital Bern
Tel. 031 632 40 70