Neuro-endocrine tumors are rare one hand and there is a wide range of treatment options in a variety of medical specialties available. For both reasons, there is very little evidence that speaks for one or another treatment option. Even the published epidemiological data are likely to be very unreliable. In December 2005, the interdisciplinary Swissnet company was founded. Interest from various disciplines involved in this society, eg Surgery Endocrinology, ecology, nuclear medicine, pathology, gastroenterology. The primary objective is to maintain a national register of neuroendocrine tumors, such as already exists in France and Germany. To detect any gaps that patients concerned Switzerland may want Swissnet, analogous to make the cantonal cancer registries, the initial recognition of the patients on the Pathology Institute and the attending physician and especially GPs. Therefore, the register depends on your cooperation and the success of the register of this cooperation depends.
From a privacy perspective, existing problems will be resolved in the light of specific conditions. In February 2009 the BAG Swissnet the club issued a special permit to keep a register. The purpose of the permit may be cited from the available: "All the Swiss Registry submitted for neuroendocrine tumors patient data may only serve to register the offenses established in the authorization tumor types. It is a continuous and systematic collection of data for analysis and interpretation of data possible, all in the area of Switzerland diagnosed with neuroendocrine tumor patients. The register aims to provide the foundations for the epidemiological study of relatively rare neuroendocrine tumors. "
With this approval all is working in Switzerland doctors, clinics and institutions granted permission to the association Swissnet report the names and addresses of patients with neuroendocrine tumors and the family doctor directly to obtain in patients consent to inclusion in the register can . The patients are within the education informed about their veto right to refuse inclusion in the register. If the veto is exercised by patients directly in the patient's family doctor, do not pass this data to the Swissnet register.
Waive the patients to exercise their veto, then any of the physicians said Swissnet-register data, which are in connection with the illness of a neuroendocrine tumor, and the above-mentioned purpose of that is transmitted or insight into this matter medical records be granted. Complete medical records, investigation reports, findings, etc. may not be directly transmitted.
Thus, the tumor registry can be successfully performed for neuroendocrine tumors, we therefore need your support. The "Study nurse" Christiane Schwarzenbach as employees of Swissnet will contact pathology institutes and primary care physicians.
For further questions please contact us at any time.
SwissNET c.o. Dr. med. Attila Kollar, Institut für medizinische Onkologie, Freiburgstrasse, 3010 Bern
Dr. med. Maurice Matter Prof. Dr. med. Francois Pralong
Präsident SwissNET Vize- Präsident SwissNET