ESPE Abstracts (2015) 84 WG3.3

European Reference Network: Accomplishments of the COST Action DSDnet

Olaf Hiort


University of Luebeck, Luebeck, Germany


Background: The European Programme on Cooperation of Science and Technology (COST) funds the formation of networking activities with Horizon 2020. In November 2013, the COST Action DSDnet was started and currently 22 European countries as well as six additional partner countries participate. The EU plans to instal European Reference Networks (ERN) by 2016 for defined rare conditions.

Objective and hypotheses: DSDnet encompasses five working groups (WGs) which compile consented information on i) clinical approaches, ii) genetics and biology, iii) laboratory aspects, iv) perception of research, and v) dissemination of information.

Method: We had a successful WG meeting in 2013 which laid the grounds for consented manuscripts on sharing of genetic information and laboratory assessement. A survey on the current status of centres of reference for DSD in the different countries was launched. And a proposal for clinical assessment is in preparation. The incorporation of young investigators was propelled forward by a Training School on ‘Holistic Care in DSD’ and the instalment of Short Term Scientific Missions (STSM).

Results: The consented manuscripts are under preparation by the WGs and will be distributed shortly. The training school included 30 trainees from 18 countries and 20 international trainers. Four STSMs were already accomplished.

Conclusion: The COST Action DSDnet is a tool to provide access to training, education and research for DSD. It aims to form a clinical ERN for urogenital rare conditions. Furthermore, it provides the basis for further structured international research grant applications.

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