Clinical trials for disease modifying therapies are emerging for frontotemporal degeneration (FTD). The current trials are focused on FTD caused by specific genetic changes. With that, comes an interest in understanding the experience of people impacted by genetic FTD.

FTD is an umbrella term for a group of related neurodegenerative disorders. While FTD has a relatively high genetic component, genetic counseling and testing are not standard clinical practice and there is little data available on the lived experience of those with genetic FTD.

The FTD Insights Survey is the largest community survey of people with lived experience of FTD. The survey queried on topics such as the diagnostic journey, disease symptoms and their impacts on daily life, experiences with treatments, perceptions of research, and willingness to participate in future studies.

Among the 1799 survey respondents, those with a family history of FTD, both diagnosed with FTD and not, nearly three quarters did not know if they carry an FTD gene. Of survey respondents who have undergone genetic testing, 60% carry a gene associated with FTD, however, 18% report not knowing if the test revealed an FTD gene or not. A relatively small percentage of respondents who consider themselves at risk for FTD have undergone testing, but they report that their risk status has had an impact on planning for the future.

The FTD Insights Survey revealed low rates of genetic testing, even among those who consider themselves at risk for developing FTD. Of those who have been tested, a subset claim they do not know if the results indicated a risk, suggesting a lack of high-quality genetic counseling. It is crucial for healthcare professionals diagnosing and treating people with FTD to consider genetic counseling to determine if genetic testing is appropriate and ensure people understand their results.