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3rd International Summer School on Rare Disease and Orphan Drug Registries

This year the program of the International Summer School will be focused on the specific aims and needs of registries oriented to clinical research, comprising the study of the natural history of diseases and the assessment of treatment effectiveness.

The School program will train participants on the methodologies and resources available for the establishment of a clinical research registry and on the implementation of successful strategies to ensure long time sustainability of the registry, including data sharing and dissemination activities.

Important Dates

  • Deadline for registration: July 20, 2015. Due to organizational constraints, registration after this date cannot not be guaranteed. 
  • Notification of acceptance: July 24, 2015. 

Registered participants will be informed by e-mail.
For additional information, clarifications, or questions, please contact the School secretariat at 


For further information click here  

To download the program please click here




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