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DTSTAMP:20260901T220625Z
UID:fa3f078f-7705-40d6-8d15-27fafbfcaeb6
DTSTART:20190923T070000Z
DTEND:20190927T160000Z
DESCRIPTION:Registries are key resources in order to increase timely and ac
 curate diagnosis\, improve patients management\, tailor treatments\, facil
 itate clinical trials\, support healthcare planning and speed up research.
 \n\nThis course is composed of two training modules:\n\nThe first module 
 “Rare Disease Registries” starts on September 23 till September 25\, 2
 019\, during these three days participants will learn (a) what resources a
 re needed for the establishment / maintenance of a high quality registry (
 b) the features of successful strategies to ensure (i) long-time sustainab
 ility of the registry\, (ii) quality\, (iii) legal and ethical issues in c
 ompliance with the EU General Data Protection Regulation and (iv) FAIR pri
 nciples\nThe second module “FAIRification of data”\, starts on Septemb
 er 26 till September 27\, 2019 during these two days participants\, workin
 g with IT-trainers\, will make use case data FAIR. The potential of a FAIR
  registry\, as the basis for cross resource questions\, will be demonstrat
 ed by executing a query across the use cases that become FAIR. In this par
 t a time slot will be allocated to discuss FAIR data management and FAIR p
 roject planning.
LOCATION:Via Giano della Bella\, 34
SUMMARY:International Summer School on Rare Disease Registries and FAIRific
 ation of Data
URL;VALUE=URI:http://www.ejprarediseases.org/index.php/international-summer
 -school-on-rare-disease-registries-and-fairification-of-data/
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