Advance Research Directives: Tools for Supporting People Who Lack Decision-Making Capacity

Discusses how advanced directives can be used in research and shares available resources.

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About this Webinar

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.

Webinar Demo:

Release Date: March 2, 2023

Language Availability: English

Suggested Audiences: IRB Administrators, IRB Directors, IRB Members, Researchers

Organizational Subscription Price: Included as part of an annual subscription to our All Access Webinar Package
Independent Learner Price: $49 per person

Webinar Content

Advance Research Directives: Tools for Supporting People Who Lack Decision-Making Capacity

Presented by: Nola Ries, PhD, MPA, LLM, JD, BA (Hons) - University of Technology Sydney

Learning Objectives:

  • Define the concept of advance research planning, which may include making an advance research directive (ARD).
  • Discuss ARDs as a strategy to support research inclusion for adults who lack capacity to give their own consent.
  • Appraise ethical and legal considerations for research that includes adults with cognitive impairment.
  • Identify ways to adapt an ARD form and guidance booklet for your organization’s own use.

Recommended Use: Required
ID (Language): 20576 (English)

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