ALLFTD Study Information

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Frontotemporal Lobar Degeneration (FTLD) is a type of dementia that affects the frontal and temporal lobes of the brain. FTLD usually affects speech, decision making, and movement. Even though it is the most common type of dementia for people under 60, it is not well understood. ALLFTD seeks to learn more about FTLD and understand the difference in brain changes due to FTLD compared to normal aging.

Every individual experience with FTLD is unique and it is difficult to predict how the disease will play out. ALLFTD wants to better understand brain changes before symptoms occur and in the early and moderate stages of the disease. Once scientists understand these changes, they can build therapies to slow the disease. ALLFTD will not provide medicinal treatment but may work with drug companies that are testing new medicines.

AM I Eligible?

ALLFTD includes symptomatic and “at-risk” participants. People with FTLD are considered to have sporadic or familial FTLD. Sporadic cases are those with no known cause. Genetic mutations cause familial FTLD. FTLD may be sporadic, with no known cause.

  • Familial FTLD (f-FTLD). You are eligible to enroll in the familial FTLD cohort if 1) you have a mutation in one of the three most common genes associated with FTD –microtubule associated protein tau (MAPT), progranulin (GRN), or chromosome 9 open reading frame 72 (C9orf72), regardless of whether you have symptoms or not, 2) you have a blood relative with a mutation in one of those genes, or 3) you have a strong family history of FTLD but no genetic mutation has been identified. Learn more about f-FTLD here.

  • Sporadic FTLD (s-FTLD). You are eligible to enroll in the sporadic cohort of the study if you have one of the following FTLD spectrum diagnoses: frontotemporal dementia, primary progressive aphasia, progressive supranuclear palsy, corticobasal degeneration syndrome, or frontotemporal dementia with amyotrophic lateral sclerosis. Learn more about these syndromes here.

What’s Involved?

ALLFTD has two arms of the study: A Longitudinal Arm and a Biofluid Focused Arm. All visits include a participant and their study partner. Those in the Biofluid Arm will take part in the study during one of their clinical visits.

Longitudinal study visits include:

  • A brain MRI

  • A blood draw. We study DNA and RNA for genetic markers of the disease, and measure blood proteins that could point to FTLD.

  • Memory and thinking skills questionnaires

  • An examination by a neurologist, so we can track changes in cognitive function

  • An optional lumbar puncture, which measure proteins in spinal fluid, which are possible indicators of FTLD.

Biofluid study visits include:

  • A blood draw

  • An examination by a neurologist

  • Questionnaires