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Kleefstra syndrome data collection and the Rare Diseases Observatory

Published on Jun 14, 202352 Views

Tanja Zdolšek

Kleefstra Syndrome Scientific Conference 2023: “Moving towards the uptake and use of Artificial Intelligence (AI) in research and clinical work”, Ljubljana 2023

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Health SciencesComputer ScienceData Science

Chapter list

Kleefstra syndrome data collection and the Rare Diseases Observatory00:00
How is the KS community collecting data?00:19
Lessons learned02:37
Rare 2030 recommendations (foresight)04:01
Rare diseases observatory05:06
Rare diseases observatory - methodology06:24
Future plans07:31
16 monitored NDDs at a glance08:30
Monitoring global media news09:45
Monitoring social M10:27
Monitoring scientific publications11:11