Genetic FTD Support Group Experience Survey

Study Title: Peer Support Groups as a Distinct, Understudied Intervention for Asymptomatic People at Risk for Genetic FTD


Investigators:
    Kim Jenny, MS, CGC
    Carrie Milliard, MS, CGC, CCRC

Institution: Association for Frontotemporal Degeneration

Purpose of the Study:

You are invited to participate in a brief research survey. The purpose of this survey is to understand what aspects of the genetic FTD support group are most valuable, what is frustrating, and how we can improve. The anonymized findings may be used to develop an conference presentation to help clinicians and researchers better understand the needs of asymptomatic people with a genetic risk for FTD.

What You Will Be Asked to Do:

If you agree to participate, you will be asked to complete a 5-question survey. It will take approximately 5 minutes to complete.

Risks and Benefits:

This study involves minimal risk. Reflecting on your experience with genetic risk and the support group may cause mild emotional discomfort. There is no direct benefit or compensation for participating, but your feedback will help improve future psychosocial support resources for the FTD community.

Confidentiality:

Your responses will be completely anonymous. The survey does not collect your name, email address, or IP address. We may use direct quotes from your open-ended answers in a presentation, but we will remove any details that could identify you. Please do not include your name or the names of family members in your text responses.

Voluntary Participation:

Your participation is 100% voluntary. Choosing not to participate, or choosing to stop the survey at any time, will not affect your membership or standing in the support group in any way. You may skip any questions you do not wish to answer.

Contact Information:

If you have any questions about this survey or how the data will be used, please contact Kim Jenny at kjenny@theaftd.org.


An IRB has reviewed this study to make sure it meets ethical and regulatory standards for protecting your rights. An IRB is an independent board that reviews research proposals to make sure they properly protect participants. To discuss study-related concerns or complaints with someone who is not part of the study team, please contact North Star Review Board at 877-673-8439 (toll free) or info@northstarreviewboard.org. You may want to contact the IRB if:
  • You have questions about your rights as a Study Participant in this study;
  • You have questions, concerns, or complaints that are not being answered by the research team;
  • You are not getting answers from the research team;
  • You cannot reach the research team; or
  • You want to talk to someone else about the research.

Statement of Consent:

By checking the box below and continuing to the survey, you confirm that:
  • You have read and understand the information above.
  • You are 18 years of age or older.
  • You voluntarily agree to participate in this research.
Consent