Press

576 people answered the FTD Disorders Registry’s March Quick Question where we asked about what types of FTD-related research content respondents would find most valuable. The information will be used to help develop new content for our Registry dashboard, website, and printed materials.

629 people answered the FTD Disorders Registry’s February Quick Question asking how often they feel socially isolated due to their or their loved one’s symptoms from a frontotemporal degeneration (FTD) disorder.

635 people answered our question
The top three answers were:
– Advancing research to benefit others at risk for impacted by FTD disorders (64%)
– Access to new treatments that aren’t available yet – (57.7%)
– Access to my study test results – (56.2%)

The FTD Insights Survey is the largest community survey of people with lived experience of FTD disorders. This survey queried on topics that included the diagnostic journey, disease symptoms, and their impacts on daily life. Shana Dodge, PhD, AFTD’s Director of Research Engagement, used data from the FTD Insights Survey in a poster session at…

500 people answered the FTD Disorders Registry’s December Quick Question about what type of non-medical interventions have made a positive difference for the person diagnosed with an FTD Disorder.

The FTD Disorders Registry’s November Quick Question received 396 responses about the type of support families with genetic FTD need.

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.

Kim Jenny, Manager of Genetic Initiatives for the Association for Frontotemporal Degeneration (AFTD), presented the results as a poster at the International Society for Frontotemporal Dementias (ISFTD)’s annual conference.

698 people answered the FTD Disorders Registry’s September Quick Question about whether they were a current caregiver for someone with an FTD disorder.

460 people answered the FTD Disorders Registry’s August Quick Question about whether they would be willing to participate in a remote research study asking about their symptoms and treatment prescribed for FTD.