The LEFFTDS project, or Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects, is a multi-site natural history study supported by the National Institutes of Health (NIH) through joint support by NIA and NINDS. A primary goal of this study is to identify the most robust and reliable methods to track disease progression in familial FTD so that disease-modifying therapeutic trials can be designed appropriately. The study aims to determine the natural history of familial FTLD using novel clinical measures. The study includes familial frontotemporal dementias caused by genetic variation in one of the three most common genes associated with frontotemporal dementia: microtubule associated protein tau (MAPT), progranulin (known as granulin or GRN), or chromosome 9 open reading frame 72 (C9ORF72). Healthy members of families with a known genetic variant are also enrolled.
The LEFFTDS study has collected a rich dataset of longitudinal clinical and imaging measures as well as associated cell lines and biospecimens developed within this program.