European Information Network on Rare Cancers (RARECAREnet) Abstract #1189

Introduction: NETs are considered as a rare cancer. Because of the complexity and the different disciplines involved, a multidisciplinary approach is desirable. The referral to centres of expertise (CoE) is indicated as the optimal strategy for effective management.
Aim(s): Providing accurate information on rare diseases like NETS to all Eu citizens is clearly stated by the Eu Commission. In this perspective the Eu project called “RARECARENet” is put in place. This project aims at building an information network for CoE and to provide comprehensive information for the community at large.
Materials and methods: During an expert meeting the ENETS criteria for CoE were followed to select criteria considered as feasible for cancer registries (CRs) to collect data on. A high resolution study is put in place, a data collection protocol and data entry tool was developed. Finally the data was checked for inconsistencies, this to ensure the quality of the data gathered.
Conference: 12th Annual ENETS Conference (2015)
Category: Epidemiology/Natural history/Prognosis - Registries, nationwide and regional surveys
Presenting Author: MSc. Jan Maarten Van der Zwan
Keywords: Registry

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