Please complete this survey so that we can better understand what the clinician community values most about genetic testing for frontotemporal degeneration (FTD) and related conditions. Your responses may assist in the development of a future sponsored testing program (genetic counseling and testing available at no cost to the patient with the costs covered by an organization). You may skip any question you do not wish to answer.

Approved
October 13th, 2026
North Star Review Board

Research Title: Survey of Clinician Perspectives on Genetic Testing for FTD
Protocol #: NB400226

Researcher: Carrie Milliard, MS, CGC, CCRP, FTD Disorders Registry, LLC

Contact Information: 415-646-4456 ext 105, cmilliard@ftdregistry.org

Research Sponsor: FTD Disorders Registry, LLC

Purpose, Procedure, and Duration:
Researchers at the FTD Disorders Registry are conducting a survey to understand the perspectives of clinicians about genetic testing for FTD, as well as sponsored genetic testing programs that may be available at no cost to the patient with the cost covered by an organization. The survey will take approximately 15 minutes.

Benefits:
You may not benefit personally from being in this study, but your answers could inform the development of future sponsored genetic tests for FTD and help us better understand what matters most to clinicians when choosing a genetic test.

Risks:
We do not anticipate any questions in this survey to cause discomfort, but you can skip any question you don’t want to answer. You can also stop the survey at any time.

We will make every effort to safeguard your data. However, we cannot guarantee the security of data obtained via the internet.

Alternative Opportunities:
We know of no alternative except not to participate in our study.

Privacy and Future Use:
Your responses to the research survey are anonymous. That means we won’t know which responses are yours. We won’t collect names, internet addresses, email addresses, or any other identifiable information.

We may use your anonymous responses in future research or share them with other researchers.

Complaints or Concerns:
If you have questions, concerns, or complaints about the research study and/or your participation in the research study, please contact Carrie Milliard, MS, CGC, CCRP, Director at FTD Disorders Registry, LLC at cmilliard@ftdregistry.org

This research is being overseen by North Star Review Board. An IRB is a group of people who perform independent reviews of research studies. You may contact North Star Review Board at 877-673-8439 (toll free) or info@northstarreviewboard.org if:

• 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. 
• You want to talk to someone else about the research study.
• You have questions about your rights as a research subject.

Thank you for taking the time to consider our study. You do not have to participate in our study, but we hope you will.

By proceeding to complete and submit this survey, you are confirming that you have read and understood the information provided in this consent document, and you voluntarily agree to participate in this research study.