#FTDQuickQuestions - Brief Surveys Bring Meaningful Insights

AFTD's Penny Dacks, Ph.D., and Debra Niehoff, Ph.D., are attending the Alzheimer's Association International Conference.

Understanding the experiences of people living with Frontotemporal degeneration (FTD) disorders and those supporting them is essential to developing clinical tools and research studies that address the specific needs of this group. Launched in June 2022 by the FTD Disorders Registry (FTDDR), #FTDQuickQuestions serves to engage people in the FTD community in anonymous, real-time data collection to learn more about the lived experience of people affected by FTD. On average, about 700 people respond monthly to these surveys. The answers generated from #FTDQuickQuestions are shared with participants and available on the FTDDR website here. Information gathered through the FTDDR and using #FTDDRQuickQuestions is also shared with clinicians and researchers to increase their understanding of the challenges and needs of people affected by FTD. with the hope of improving care and accelerating research towards a cure. Recently, the FTDDR shared their success with #FTDDRQuickQuestions engagement at the Alzheimer’s Association International Conference (AAIC) in Amsterdam.

Thank you to everyone who has participated in #FTDQuickQuestions, your answers are educating researchers and shaping the future of FTD research. If you haven’t participated in #FTDQuickQuestions yet, consider sharing your experience next month! Together we can change the course of this disease through research and education.