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DTSTAMP:20260927T130105Z
UID:09bb2eb8-1b63-465a-9487-d6b01a86984d
DTSTART:20210927T120000Z
DTEND:20211001T151000Z
DESCRIPTION:The International Summer School on Rare Disease Registries and 
 FAIRification of Data is a part of a series of training activities propose
 d by the European Joint Programme on Rare Diseases (EJP-RD). EJP-RD is a E
 uropean Commission funded project with the goal “to create a comprehensi
 ve\, sustainable ecosystem allowing a virtuous circle between research\, c
 are and medical innovation”. For more information about the EJP-RD\, see
  https://www.ejprarediseases.org/\n\nThis course is composed of two traini
 ng modules:\n– During the first three days module (27-29 September 2021)
 \, participants will learn (a) what resources are needed for the establish
 ment/maintenance of a high-quality registry (b) the features of successful
  strategies to ensure (i) long-time sustainability of the registry\, (ii) 
 quality\, (iii) legal and ethical issues in compliance with the EU (Europe
 an Union) General Data Protection Regulation\n– During the second two da
 ys module “FAIRification of data”\, (September 30 -October 1\, 2021) p
 articipants will deepen their knowledge on the single steps of the FAIRifi
 cation of data and will discover the potential of FAIR registries. In this
  part a time slot will be allocated to discuss FAIR data management and FA
 IR project planning.
SUMMARY:International Summer School on Rare Disease Registries and FAIRific
 ation of Data
URL;VALUE=URI:https://www.ejprarediseases.org/event/training-on-rare-diseas
 e-registries-and-fairification-of-data-at-the-source/
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