FTD Studies: Understand the natural history of FTD

AD-Related Dementias Focus

Understand phenotypic heterogeneity and natural history including in populations that experience health disparities.

2025 NOT-NS-18-082: Notice of the NINDS' Participation in PAR-18-296 and interest in Clinical Trial readiness applications for Frontotemporal Degeneration (FTD) by the National Institute on Aging and the National Institute of Neurological Disorders and Stroke 1.M Achieved Understand phenotypic heterogeneity and natural history in FTD. 2016 ADRD Summit: Frontotemporal Lobar Degeneration (FTD) Focus Area 2: Clinical science, Recommendation 4 (PDF, 901K) News: Large study explores age of onset of frontotemporal dementia by genetics, family history News: Electronic health records-based tool uses data to detect undiagnosed dementia News: Blood test method may predict Alzheimer’s protein deposits in brain Population Studies and Precision Medicine Advancing Research & Treatment for Frontotemporal Lobar Degeneration – Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (ARTFL-LEFFTDS) National Centralized Repository for Alzheimer’s Disease and Related Dementias NINDS Human Cell and Data Repository (NHCDR) ALLFTD Improving Prediction of Prognosis in Frontotemporal Dementia Using Epigenetic and Genetic Markers of Biological Aging and Disease

  • At least one natural history study of pre-clinical, inherited FTD.
  • At least one natural history sporadic FTLD.

Summary of Key Accomplishments

The ALLFTD study is a comprehensive natural history study covering inherited forms of FTD, where individuals have been followed from health to disease. Important findings from this study have shown that the type of causative mutation has a major impact on disease progression and biomarkers of disease progression.

The key accomplishments summary is current as of July 2022.