- Study Directors: Brad Boeve, MD, Adam Boxer, MD, PhD and Howard Rosen, MD, and Adam Boxer, MD, PhD
- Sponsors: The Association for Frontotemporal Degeneration, The Bluefield Project, CBD Solutions, CurePSP Inc., FTD Disorders Registry LLC, National Institute of Neurological Disorders and Stroke, National Institute on Aging, Rainwater Charitable Foundation and Tau Consortium.
- Official Study Title: ARTFL–LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) research consortium
- 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
The goal of the ALLFTD study is to understand the changes in brain function that occur as a result of disease progression, and how changes differ from normal aging. By tracking changes in clinical features (symptoms, neurologic examination) and biomarkers (neuropsychological tests, blood proteins, MRI, CSF proteins) over several years, the investigators predict to see changes in biomarkers that precede clinical changes by years or even decades.
The overall goal of ALLFTD is to prepare for treatment trials in FTLD by focusing on several major activities:
- Characterizing FTLD patients (including familial FTLD [f-FTLD] and sporadic FTLD [s-FTLD]) followed at expert centers who can potentially be available for treatment trials
- Collecting comprehensive cognitive and behavioral assessment data, in addition to imaging, blood, and cerebrospinal fluid (CSF), with the following goals:
- Identifying the best clinical measurements and biomarkers for following patients with FTLD in treatment trials
- Identifying clinical measurements and biomarkers that indicate when a person with a high risk of developing FTLD due to a mutation will begin to have symptoms.
- Sharing clinical data, images and biological samples from participants affected by FTLD with the scientific community to address additional scientific questions about FTLD
Study Details
Participants enrolled in ALLFTD are carefully assessed through interviews, physical examinations, cognitive testing and blood and/or CSF testing, and in many cases brain imaging, in order to describe how each person is affected, or not affected, by FTLD. Please see the ALLFTD website for more information about the study.
ALLFTD is currently enrolling participants with the conditions below:
- 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
What to Expect
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. Also, every participant is required to identify an “informant” (usually a close friend or family member) who can provide their perspective on how the participants are doing.
ALLFTD participants have a comprehensive evaluation. This assessment usually takes about two full days to complete, often more, and so participants must return to the center from home multiple times within a couple of weeks or stay overnight nearby in order to complete them. The assessment includes:
- Interview and examination by a physician
- Cognitive testing using traditional “pencil and paper” tests as well as computerized cognitive testing
- Interview of an informant by a nurse or study coordinator
- Brain imaging using MRI
- Blood collection
- Lumbar puncture (often called a spinal tap) optional
Participants and their informants also fill out questionnaires about various aspects of their life, including habits such as exercising, eating, occupation, hobbies, and use of cigarettes and drugs or alcohol.
Contact Information
If you are interested in participating in this study or have any questions, please contact the study management team at [email protected].