This section is dedicated to the E-Rare and all important events related to the research on rare diseases. It is being updated on a weekly basis.

Epirare International Summer School

Epirare International Summer School
Monday, September 16, 2013

"Rare Diseases and Orphan Drug Registries" course organized by National Center for Rare Diseases, Istituto Superiore di Sanità,  will take place on the 16 - 20 September 2013, Rome, Italy.

Important: Deadline for application submission is 30 of July 2013.

The course will take the participants through the main concepts and practical steps that must be undertaken in the establishment and management of a rare disease registry to ensure its usefulness, soundness and sustainability. The course will provide basic notions on the methodology of observational studies with a view to the specificity of rare disease registries, on the selection of data elements with a focus on the interoperability of rare disease registries, on quality assurance and on the technical and legal tools that must be adopted to protect patients’ data confidentiality.

The presentations followed by small group exercises are foreseen.

 

For more information, detailed program and application form click HERE

 

E-Rare 2012 - Created by Toussaint Biger