Genetic testing rates of individuals diagnosed with FTD and close biological relatives assessed in the FTD Insights Survey

Less than a quarter of FTD patients received genetic testing despite genetic forms comprising a notable percentage of all FTD cases. Highest rates were reported for individuals diagnosed with FTD with ALS, and rates were higher with known family history. Low rates of genetic testing may exacerbate challenges facing families impacted by FTD such as assessing familial risk of developing FTD and determining eligibility for investigational drugs in development for genetic forms of FTD. Additional research is needed to better understand the accessibility of genetic testing and counseling. Taken together, these findings highlight the need to further raise awareness of genetic FTD with healthcare providers, patients, and biological relatives.