Frontotemporal Dementia Research (FTD)

Frontotemporal Dementia Research (FTD)

Approximately 5% of all dementia patients present with Frontotemporal Dementia (FTD), including ~10-20% of those dementia patients before the age of 65 years. Though FTD is unique in its loss of social cognition or language disturbances, it shows overlap with other diseases, such as Alzheimer Disease (AD).

This research study at the John P. Hussman Institute for Human Genomics (HIHG) focuses on how genetics play a role in FTD. Currently, FTD is mostly overlooked in genetic research due to the interest in the more common Alzheimer’s Disease. The FTD study in Miami would like to change that narrative.

Though some interesting results have come out of genetic research in FTD so far, much information is still missing. Additionally, existing FTD genetic efforts are often limited to non-Hispanic white patient groups, clearly indicating a gap of knowledge on genetic factors unique to underrepresented populations such as Hispanics and African Americans or shared across populations.

To improve knowledge on genetics in FTD overall across all population groups, we would like to create a diverse collection of FTD patients to study their genetics. Results from these studies will translate into better diagnoses and eventual treatments for a broader community of people.

The HIHG is dedicated to addressing health disparities in genomic research. The HIHG team led by Drs. Nuytemans, Pericak-Vance and Vance are committed to extend the FTD research to diverse populations to identify novel variants and understand genetic contributions to FTD across populations.

For more information, or to participate in our Frontotemporal Dementia Study, please contact us at:

Phone: 1-877-686-6444

NOTE ON COVID-19: Frontotemporal Dementia is not taking a break and neither are we. We continue to find a solution that will help those affected by the disease. In response to COVID-19, we have converted our research study to allow for participation for those interested without putting anyone at-risk. We have halted in-person visits for now. We will complete as much of the recruitment as possible via telecommunication/over-the-phone questionnaires. We will resume in-person study activities (requirement of sample to be used for testing of genetic biomarkers) as soon as it is safe to do so. Please find phone numbers and resources on our home page if you have any questions about COVID-19. Thank you and stay safe!

For more information on FTD in general, national resources, caregivers information, etc. , please visit the Association for Frontotemporal Degeneration’s website: