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Adults with cognitive impairment are often excluded from research due to concerns about decision-making capacity. Advance research directives (ARD) are a tool for people to document their wishes about research participation in the event of incapacity. While the legal status of ARDs varies, there is support for the principle that prior documented wishes should inform future decisions about research participation.
The webinar discusses the developing body of research that investigates stakeholder perspectives on ARDs and strategies for implementation. An ARD form and guidance booklet will be shared. These resources were developed with input from dementia researchers and public/patient representatives.
IRB Administrators, IRB Directors, IRB Members, Researchers
Meet the Presenter
Nola Ries, PhD, MPA, LLM, JD, BA (Hons) – University of Technology Sydney
Nola Ries is a Professor with the Faculty of Law, University of Technology Sydney, Australia. She has expertise in health law, with a special interest in the ethical and legal governance of research involving people with dementia. She has served on human research ethics committees in Australia and Canada.