Study Overview

  • Principal Investigator: Bradford Dickerson, MD
  • SponsorsNational Institute on Aging (NIA)
  • Conditions Studied: Sporadic and familial behavioral variant of frontotemporal dementia (bvFTD), behavioral variant of frontotemporal dementia with motor neuron disease (bvFTD-MND), semantic variant of primary progressive aphasia (svPPA), nonfluent variant of primary progressive aphasia (nfvPPA), progressive supranuclear palsy (PSP), corticobasal syndrome (CBS), any member of a family with a history that suggests FTLD, including patients with symptoms of any form of FTLD and people who are part of these families but have either no symptoms or questionable symptoms.

Purpose of the Study

ALLFTD is a multisite research project aimed at understanding the changes in brain function that occur over time as a result of frontotemporal lobar degeneration (FTLD) syndromes. FTLD syndromes can include bvFTD, bvFTD with ALS, PPA, PSP, or CBD. Some forms of FTLD are genetic, while others are not. ALLFTD is interested in all forms of FTLD.

In this study, we are also trying to understand which tools and measures (such as memory/language tests, MRI, blood biomarkers, etc.) can help us best track FTLD progression, which can then inform future clinical trial design.

Study Details

ALLFTD currently targets mainly in-person assessment of participants with specific diagnoses in the FTLD spectrum, with the expectation that all patients will come for repeat assessments each year. For those who are unable or unwilling to return for annual evaluations, a more focused assessment of participants is performed. Portions of the study visits can be done remotely if needed.

What to Expect

  • A brief physical and neurological exam
  • Evaluation of memory and thinking skills
  • Questionnaires for participant and study partner
  • MRI scan of the brain
  • A sample of blood will be drawn
  • Optional lumbar puncture for studies on cerebrospinal fluid

Contact Information

If you are interested in this study, please contact Erin Krahn (ekrahn@mgh.harvard.edu)

Additional Information