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X-ORIGINAL-URL:https://canadianrdn.ca
X-WR-CALDESC:Events for Canadian Rare Disease Network
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BEGIN:VTIMEZONE
TZID:UTC
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TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20230101T000000
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TZID:Asia/Dubai
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DTSTART:20230101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240618T080000
DTEND;TZID=UTC:20240619T170000
DTSTAMP:20260404T094750
CREATED:20240603T235839Z
LAST-MODIFIED:20240603T235839Z
UID:4370-1718697600-1718816400@canadianrdn.ca
SUMMARY:IRSF Rett Syndrome Scientific Meeting
DESCRIPTION:Part of ASCEND 2024\, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting\, attendees representing academia\, industry\, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed in the clinic. \nThe IRSF Rett Syndrome Scientific Meeting is the only annual\, global\, and comprehensive research meeting focused exclusively on Rett syndrome.
URL:https://canadianrdn.ca/event/irsf-rett-syndrome-scientific-meeting/
LOCATION:westminister\, Westminister\, CO\, United States
CATEGORIES:Conferences,Healthcare,In Person,Industry,International,Patient Focused,Research Focused
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BEGIN:VEVENT
DTSTART;TZID=Asia/Dubai:20240618T120000
DTEND;TZID=Asia/Dubai:20240618T140000
DTSTAMP:20260404T094750
CREATED:20240613T015758Z
LAST-MODIFIED:20240613T015758Z
UID:4432-1718712000-1718719200@canadianrdn.ca
SUMMARY:Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange
DESCRIPTION:The access and use of health data for research raises concerns related to privacy\, commercial motives\, equity and fairness for members of the public who want to know who is using data generated from their personal information and why. But despite concerns\, there are clear benefits to using health data in research\, including better patient care\, better health system planning\, and better understanding of disease and wellness. \nIn this two-hour\, interactive workshop co-hosted by HDRN Canada. and PHRN Australia\, Julia Burt and Dr. Annette Braunack-Mayer will discuss how public engagement and dialogue can help us understand community attitudes about the use of health data in research. They will explore why members of the public support the use of health data in research and under what conditions\, as well as reservations or concerns that arise. Julia and Annette will compare engagement methods from their respective research projects on community attitudes related to the use of health data in research\, and share findings from Canada and Australia. \n 
URL:https://canadianrdn.ca/event/is-this-okay-community-attitudes-on-using-health-data-in-research-in-canada-and-australia-a-cross-cultural-exchange/
CATEGORIES:Healthcare,International,Patient Focused,Policy,Research Focused,Virtual,Webinars
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