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Evaluation of an Online Decision Aid for Alzheimer's Genetic Testing


This nationwide, online-only study will evaluate a prototype online aid designed to help people think through whether or not to undergo genetic testing for late-onset Alzheimer's disease. Participants will examine the prototype and offer feedback about its clarity and helpfulness in presenting important personal and family issues.

Minimum Age Maximum Age Gender Healthy Volunteers
21 60 Both Yes
November 2014
March 31, 2024

  • Access to a computer and an e-mail account
  • Ability to read English and understand spoken English   


Genetic testing can help individuals determine their risk for diseases that can occur later in life. For some people, such information is useful. For others, it can provoke serious emotional distress, adversely affect family members, and raise concerns about possible misuse of data. In this study, participants will take online surveys to evaluate a web-based tool designed to guide decisions about whether or not to seek genetic testing for late-onset Alzheimer's disease.

Participants will take part in a two-part survey, sent by e-mail. The first part will collect basic information before the decision aid is used; this should take about 15 -20 minutes. Participants will then be asked to examine the decision aid itself. The time associated with this may vary and can be done in several short periods. A week later, the second part of the survey will ask for an overall evaluation about the decision aid and reflections on genetic testing. This should take about 15 minutes.

No survey information will ever be linked to the participant's e-mail address. There is no genetic testing associated with this study, whose findings will be used to enhance the utility and robustness of the decision aid and make it available online to a wider community.

To participate, call 1-855-650-4949.

Alzheimer's and Related Diseased Award Fund of the Commonwealth of Virginia

Name Role Affiliation
Doris T. Zallen, PhD Principal Investigator Virginia Tech University
Golde I. Holtzman, PhD Co-Investigator Virginia Tech University
Kye Y. Kim, MD Co-Investigator Virginia Tech Carilion School of Medicine
Susan M. Willis, PhD Director Virginia Tech Center for Survey Research

Name Phone Email
Doris T. Zallen, PhD 540-231-4216
Susan M. Willis, PhD 540-231-3695

Evaluation of a Web-Based Decision Aid for People Considering a Genetic Test for Alzheimers Risk