The Italian National Centre for Rare Diseases is organising an international summer school on rare disease and orphan drug registries. 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. It will provide basic notions on the methodology of observational studies, selection of data elements, quality assurance, technical and legal tools. The school will be held in Rome on 16-20 September 2013. The course is available free of charge. Travel and accommodation expenses are not covered by the organisers. Deadline for application submission is July 30, 2013. For further information, please visit the official website of the event.
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