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VERSION:2.0
PRODID:icalendar-ruby
CALSCALE:GREGORIAN
BEGIN:VEVENT
DTSTAMP:20260928T221046Z
UID:96b04f2c-8791-4ff9-a251-32dd267109c2
DTSTART:20200928T120000Z
DTEND:20201002T153000Z
DESCRIPTION:Registries are key resources in order to increase timely and ac
 curate diagnosis\,\nimprove patients management\, tailor treatments\, faci
 litate clinical trials\, support\nhealthcare planning and speed up researc
 h. \nThis course is composed of two training modules:\n\n  - during the fi
 rst three days module *28-30 September 2020*\, participants will learn (a)
 \nwhat resources are needed for the establishment/maintenance of a high qu
 ality\nregistry (b) the features of successful strategies to ensure (i) lo
 ng-time sustainability of\nthe registry\, (ii) quality\, (iii) legal and e
 thical issues in compliance with the EU General\nData Protection Regulatio
 n\n  - during the second two days module “FAIRification of data”\, *1-
 2 October 2020*\, \nparticipants will deepen their knowledge on the single
  steps of the FAIRification of data\nand will discover the potential of FA
 IR registries. In this part a time slot will be allocated\nto discuss FAIR
  data management and FAIR project planning.
SUMMARY:International Summer School on Rare Disease Registries and FAIRific
 ation of Data
URL;VALUE=URI:https://www.ejprarediseases.org/index.php/international-summe
 r-school-on-rare-disease-registries-and-fairification-of-data-2/
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