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UID:4095-1716372000-1716375600@canadianrdn.ca
SUMMARY:Clinical trials in rare disease: The role of patient registries
DESCRIPTION:Therapies for rare diseases are emerging at a rapid pace yet rigorous evidence regarding their safety\, efficacy\, and effectiveness in practice is often sparse and is difficult to generate. High quality longitudinal patient registries may help to address this evidence gap.
URL:https://canadianrdn.ca/event/clinical-trials-in-rare-disease-the-role-of-patient-registries/
CATEGORIES:National,Patient Focused,Policy,Virtual,Webinars
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DTSTART;TZID=America/New_York:20240509T130000
DTEND;TZID=America/New_York:20240509T143000
DTSTAMP:20260411T182405
CREATED:20240523T195914Z
LAST-MODIFIED:20240523T195914Z
UID:4178-1715259600-1715265000@canadianrdn.ca
SUMMARY:PxP Webinar 2 2024: Motivations for being a patient partner in research
DESCRIPTION:The webinar series is all about patient engagement in health research\, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare\, but a research participant generally does not give input into the research study itself.
URL:https://canadianrdn.ca/event/pxp-webinar-2-2024-motivations-for-being-a-patient-partner-in-research/
CATEGORIES:Healthcare,International,Patient Focused,Research Focused,Virtual,Webinars
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