FTD: Studying FTD causes and risk factors in people

AD-Related Dementias Focus

Understand FTD epidemiology and genetics in diverse populations, including how socioeconomic and ethnocultural status affects disease risk and manifestations.

2027 1.T In Progress DN 2022 ADRD Summit: Frontotemporal Dementia, Milestone 1, Priority 1 Highlight: Study of Protective Gene Variant Provides Insight into Delaying Onset of Alzheimer’s Dementia New clinical assessment tool improves dementia care actions in primary care patients Population Studies and Precision Medicine The ALLFTD Research Study

  • At least one initiative that supports the development of new clinical assessment tools to identify and characterize FTD in diverse populations.
  • At least one natural history study of FTD, including genetic risks and genetic causes for FTD, that is powered to determine whether there are differences in the prevalence, incidence, risk, and resilience factors for FTD in diverse populations.

Summary of Key Accomplishments

NIA has supported several initiatives to study FTD causes and risk factors in people. In partnership with NINDS, NIA supports the ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) study. Frontotemporal lobar degeneration (FTLD) is the progressive degeneration of the frontal and temporal lobes of the brain, leading to the changes in personality, behavior, and language that are observed in FTD and related disorders. By following a large and diverse national cohort, ALLFTD seeks to learn more about FTLD, including how the brain changes compared to normal aging. The ALLFTD study has identified genetic risk factors in their cohort and characterized how they affect brain health and disease progression.

Additionally, one clinical trial funded by NINDS in collaboration with NIA looked into “5-cog”, a five-minute cognitive assessment which combines three metrics designed to test memory recall, the connection between cognition and gait, and the ability to match symbols to pictures. Importantly, these tests are easy to perform, relatively quick, and are not affected by reading level or ethnic/cultural differences among patients. 5-cog was used to rapidly assess cognitive impairment in patients before seeing their physicians, who then determine follow-up care using a decision tree embedded in electronic medical records. Use of the 5-Cog system improved the odds three-fold that a patient would receive dementia-related care compared to standard care.

The key accomplishments summary is current as of September 2025.