What is the ALLFTD Study?
ALLFTD is a multisite research project aimed at understanding the changes in brain function that occur as a result of frontotemporal lobar degeneration (FTLD) syndromes.
FTLD syndromes can include:
• Behavioral variant frontotemporal dementia (bvFTD)
• bvFTD with Amyotrophic lateral sclerosis (FTD-ALS)
• Primary progressive aphasia (PPA)
• Progressive supranuclear palsy (PSP)
• Corticobasal degeneration (CBD)
Some forms of FTLD are genetic, while others are not. ALLFTD is interested in all forms of FTLD.
What is the Purpose of ALLFTD?
The study aims to learn about changes over time in FTLD syndromes. A particularly important goal of the study is to measure different proteins in blood and cerebrospinal fluid (CSF) to identify markers of disease progression that may be used for future disease monitoring and therapeutic trials.
Study procedures include a clinical examination, memory and thinking tests, brain MRI, blood draw. Optional procedures include genetic counseling / testing and lumbar puncture. The duration of this study is up to 5 years.
Eligibility
- 18 years and older
- Been diagnosed with an FTLD syndrome like bvFTD, FTD- ALS, PPA, PSP, or CBD
- Are from a family with a mutation in a gene known to cause FTLD (such as C9orf72, MAPT, and GRN)
- Have a significant family history of FTLD suggesting a familial genetic mutation.
If you are from groups 2 or 3, you don’t have to have symptoms to participate and you don’t need to know your mutation status to participate.
If you are interested in learning more about the ALLFTD study, please contact the Memory and Aging Program Outreach Team at (401) 455-6402 or by sending an email to memory@butler.org. Ask for the “ALLFTD study.”