PRESS & NEWS
Quick Question October 2024 Result: How much do you feel you (or your loved one’s) participation in the Registry could contribute to advances in FTD research?
552 people answered the FTD Disorders Registry’s October Quick Question about how much they felt participation in the Registry could contribute to advances in FTD research.
552 people answered the FTD Disorders Registry’s October Quick Question about how much they felt participation in the Registry could contribute to advances in FTD research.
Majority of respondents (74.2%) believe that participating in the Registry contributes to advances in FTD research.
Of the 127 people who did not think participation in the Registry will help with FTD research, a wide range of answers including either the diagnosed person’s condition is too advanced or a personal reason of their own.
These answers have been enlightening about the need for greater education about how the lived experience of diagnosed persons, their caregivers, and their biological family members can contribute to a better understanding of FTD disorders even if their loved one has passed away. They also showed a greater need for education about the role of the Registry in driving this research forward.
Individuals answering this month’s Quick Question reported from many different stages in the FTD journey.
86 people identified the stage they or their loved one is currently in as newly diagnosed or mild cognitive decline. 97 people identified the part of the journey that they or their loved is on as late stage or severe cognitive decline. 173 reported that their FTD-diagnosed loved one had passed on. 188 people identified the stage that they or their loved one was on as mid-stage or moderate cognitive decline.
The Registry team will be using data from this Quick Question to develop additional tools to provide information and education about the role of the Registry. Anyone with a connection to FTD disorders and an interest in research can join the Registry. By joining the Registry, you help researchers get a better understanding of how many people are impacted by FTD disorders and gain access to clinical trial announcements and educational resources.
Together we can find a cure for ftd
The FTD Disorders Registry is a powerful tool in the movement to create therapies and find a cure. Together we can help change the course of the disease and put an end to FTD.
Your privacy is important! We promise to protect it. We will not share your contact information.