Frontotemporal Dementia Research Program

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.

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 can you 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 informant 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.

The Principal Investigator for the study is Dr. Richard Ryan Darby, MD

This study is currently enrolling.

For more detailed information on this study please contact:

Lead: Jerica Reeder
Lead: Clinical Translational Research Coordinator III
Phone: (615) 875-2987
Email: jerica.reeder@vumc.org

2 Coordinators: 

Siyi Wang
Clinical Translational Research Coordinator I
Phone: (615-875-9265)
Email: s.wang@vumc.orgLindsey Keener
Clinical Translational Research Coordinator I
Phone: (615-875-8731)
Email: lindsey.keener@vumc.org

This study aims to understand social decision-making deficits in dementia patients as it pertains to legal complications and connect this with neurodegeneration patterns in brain imaging.

What can you expect?

Computer Tasks

When you participate in a computer study, you will be asked answer questions about how you would make moral and social decisions in certain situations. No computer experience is necessary to perform these tasks and rest breaks are provided frequently.

MRI

For the Magnetic resonance imaging (MRI) study, you will be asked to lie still while being scanned in the magnet for about 50 minutes for 1 session.

Questionnaires

A series of questionnaires will be given to the patient and their caregiver. The questionnaires will ask questions pertaining to social and moral decision-making skills and memory assessments. 

Eligibility:

• Males and Females
• Age 18 to 85
• Have a diagnosis of Behavioral Variant Frontotemporal Dementia, Alzheimer's, or Mild Cognitive Impairment. 

Exclusion Criteria:

Unstable/untreated medical condition, history of mental illness, hearing/visual impairments; standard MRI exclusion criteria, including: claustrophobia, any trauma or surgery which may have left ferromagnetic material in the body, ferromagnetic implants or pacemakers, inability to lie still.

Participants will be compensated for their time. Travel expenses are reimbursed for participants who have to travel more than 15 miles.

The Principal Investigator for the study is Dr. Richard Ryan Darby, MD

This study is currently enrolling.

For more detailed information on this study please contact:

Lead: Siyi Wang
Clinical Translational Research Coordinator I
Phone: (615-875-9265)
Email: s.wang@vumc.org

The primary purpose of this phase 3, multicenter, randomized, double-Blind, placebo-controlled study is to evaluate the efficacy and safety of AL001 in individuals at risk for or with Frontotemporal Dementia due to heterozygous mutations in the progranulin gene

What can you expect?

This study is enrolling symptomatic and pre-symptomatic patients who have a known progranulin genetic mutation. If genetic status is unknown, please contact the coordinator below to discuss available options for genetic testing, insurance information, and counseling. Eligible participants will be involved in monthly infusion visits that may also include blood sampling, MRI imaging, optional lumbar puncture, neuropsychological assessments, and other various clinical procedures.

Subjects enrolled in this placebo-controlled study will receive monthly infusions over the course of 1 to 2 years, after which they will be eligible for an open-label extension, on which every subject receives the drug. 

The Principal investigator for the study is Dr. Lealani Acosta MD, MPH.

Enrollment is closed.

For more detailed information on this study please contact:

Lead: Jerica Reeder
Clinical Translational Research Coordinator III
Phone: (615) 875-2987
Email: jerica.reeder@vumc.org