The FTD Disorders Registry helps to support clinical trials in all forms of frontotemporal degeneration, including:
- Behavioral variant frontotemporal degeneration (dementia) (bvFTD)
- Semantic variant primary progressive aphasia (svPPA)
- Nonfluent/agrammatic variant PPA (naPPA)
- Logopenic variant PPA (lvPPA)
- Progressive supranuclear palsy (PSP)
- Corticobasal degeneration (CBD) / corticobasal syndrome (CBS)
- Frontotemporal degeneration with amyotrophic lateral sclerosis (FTD-ALS)
Observational Studies (Natural History or Longitudinal)
ALLFTD (ARTFL LEFFTDS Longitudinal Frontotemporal Dementia), an expansion of the previous studies ARTFL and LEFFTDS, is an observational study that seeks to evaluate sporadic (s-) and familial (f-) FTLD patients, and family members of f-FTLD patients without symptoms. The goal of ALLFTD is to prepare for treatment trials.
Participants must be 18 years or older and either have a referring FTLD diagnosis or be a member of a family with a history of FTLD. In addition, they must have a study partner who can provide perspective on how they are doing.
Targeted enrollment is 2,100 participants.
There are 27 study locations in the United States and Canada.
Have you recently had difficulties with planning, organizing, or solving problems? Changes in personality or mood that affect your daily life? Problems managing or completing task you’ve done before? If you are between the ages of 40 and 64, and are concerned about your thinking or memory ability, the BEYONDD study might be right for you. Volunteers from diverse populations (Latinx/Hispanic, Black/African American, Asian American, Pacific Islander, and American Indian/Alaska Native) are needed to help researchers improve brain health in these groups.
BEYONDD is a diverse team of doctors, scientists, and other researchers, working together to bring diversity and inclusion to early onset dementia (EOD) research by reaching out to adults from diverse populations. EOD impacts people at the peak of life. It changes the way people think, act, talk, and behave. Little is known about EOD in diverse populations.
Join the study looking to lower the health disparities in the U.S. and make sure that people of all races are included in finding new ways to treat EOD. Study volunteers get some amazing perks. You’ll get to work with world-renowned experts and learn more about your own health. You’ll have access to digital tests of thinking and memory, clinical laboratory tests, and feedback from the clinical team – all from the comfort of your own home. If you are able and willing to come into one of BEYONDD’s expert centers after completing the online study, you can access a one-on-one session with a BEYONDD doctor and brain scans. Even better, it’s all at no cost to you.
For more information, visit www.beyonddproject.org or call us at 1 (866)-7MYMIND.
The Bluefield Project to Cure Frontotemporal Dementia is recruiting members of families with genetic forms of FTLD for the Neurofilament Surveillance Project (NSP) study.
The NSP measures blood levels of a protein called neurofilament light chain (NfL) to see how it reflects FTD.
Participants must be a member of a family with someone who has a disease-causing mutation in chromosome 9 open reading frame 72 (C9orf72), progranulin (GRN), or tau (MAPT).
The participant does not need to have a mutation or know their own mutation status, however, they must also enroll in the ARTFL-LEFFTDS Longitudinal FTLD (ALLFTD) study.
Participation involves a blood draw every three months for three years, for a total of 13 blood draws. Blood draws and study questions are handled by a certified mobile research nurse and may be done at home, work, or other location. These more frequent blood draws will enable a better understanding of NfL for use in treatment trials.
This study is enrolling children and young adults from families with frontotemporal dementia (FTD) and Alzheimer’s disease (AD) caused by genetic variants. For FTD, these include MAPT, GRN, and C9orf72.
The purpose of this study is to better understand brain development in families with dementia. Brain development in persons from genetic FTD and AD families will also be compared to persons from neurodiverse populations.
Participation involves a 2- to 3-day visit to the University of California, San Francisco. This visit includes clinical and cognitive evaluation, MRI brain scan, emotions testing, questionnaires, and a saliva sample for genetic testing. Participants and their family members will not learn their mutation status.
Participants must be between 7 and 17 years old (young adults up to 25 may be eligible), have a biological family member with genetic FTD or AD, and have a study partner who can accompany them.
Travel, lodging, and meals will be reimbursed; and monetary compensation for the study will be provided.
Target enrollment is 190 participants.
This online study is being conducted by the University of California San Francisco Memory and Aging Center to learn more about changes in decision-making in family members of patients with genetic forms of FTD.
It compares decision-making in family members who have these genes to family members who don’t have these genes.
You are eligible to take part in this study if you are a family member of a patient with a genetic form of FTD that is enrolled in the ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Study, and you yourself do not have a diagnosis of dementia.
PET Imaging Study
Yale PET Center is studying behavioral variant frontotemporal dementia (bvFTD) with the new synaptic density positron emission tomography (PET) tracer 18F-SynVesT-1. The new tracer binds to a protein in synapses and provides synaptic measurements in living people. By comparing this to a known PET tracer, 18F-FDG, this study seeks to provide early detection and progression of bvFTD. Participation involves one phone screening and at least three in-person visits to sites in New Haven, Connecticut. In-person visits include a screening appointment, a magnetic resonance imaging (MRI) scan, and up to two PET scanning sessions. The study will recruit 15 persons between the ages of 40 and 80 who have been diagnosed with bvFTD. For more information, contact Yanghong Yang MD or Waleed Ibrahim MD at 203-785-6355 or email : Yanghong.Yang@yale.edu or Waleed.Ibrahim@yale.edu.
The Alzheimer Disease Related Dementia studies at the University of Miami are looking for participants to better understand the genetic factors contributing to frontotemporal dementia (FTD), especially in Hispanic, African American, and Native American populations.
Genetics helps us improve the knowledge of biology, diagnosis, and future therapies for these diseases.
Participants must be 18 years or older; have a diagnosis of FTD, PPA, or semantic dementia; and identify as Hispanic, African American, or Native American.
Participation includes interviews for family and medical history and clinical assessments, which can be done remotely in one or two visits (total about 3 hours), as well as a one-time blood draw, which can be completed at the participant's home.
Target enrollment is 100 participants.
For more information, email Anisley Martinez at FTD-HIHG@miami.edu or visit the University of Miami Frontotemporal Dementia Research webpage.
The observational primary progressive aphasia (PPA) research program at Northwestern University seeks to study individuals living with PPA over time using neuropsychological testing and advanced imaging techniques.
Participants are asked to come to Chicago in order to help:
- understand progression in PPA and its link to brain changes,
- increase awareness of PPA and better educate patients, families, and clinicians,
- identify biomarkers that will lead to earlier diagnosis and earlier intervention.
Participants are compensated for participation and travel expenses, and meals are covered for those not local to Chicago.
ASPIRE-FTD is a clinical study to research the effects of AVB-101, an experimental gene therapy designed to restore levels of progranulin in the brain, potentially slowing or stopping the progression of FTD-GRN. ASPIRE-FTD is the first study of AVB-101 in humans. It aims to evaluate the safety of AVB-101 and measure its effects on progranulin levels and the symptoms of FTD.
WHO CAN PARTICIPATE IN THE STUDY?
You may be eligible to participate if you meet the following criteria*:
- 30-75 years old
- Diagnosed with FTD-GRN (this will be confirmed with a genetic test)
- Have a caregiver who is able to support you (including attending study visits) for the duration of the study (5 years and 3 months)
*Other criteria will also apply.
WHAT IS THE STUDY TREATMENT?
The study treatment in ASPIRE-FTD is an experimental gene therapy called AVB-101, which contains a correct (non-mutated) version of the GRN gene. It is designed to restore levels of progranulin in the brain, potentially slowing or stopping the progression of FTD-GRN. AVB-101 will be delivered as a ‘one-time dose’ directly into the brain via a minimally invasive surgical procedure, performed by a study neurosurgeon at a specialist neurosurgical center.
WHAT DOES STUDY PARTICIPATION INVOLVE?
1. Screening/baseline period
- This involves an initial screening visit where assessments and tests will be performed to see if you meet the requirements to take part in the study, and another visit closer to the planned date of surgery called the baseline visit where baseline tests are conducted (these are tests done before a treatment is given to compare to after a treatment is given). Each visit may be scheduled over 1 or 2 days, and the Screening/baseline period will last up to 12 weeks in total, to allow for collection of the various test results.
- Screening/baseline assessments include: a genetic test for a GRN mutation, physical and neurological exams, questions about your FTD symptoms and any medications you currently take, imaging of your brain (MRI), a heart test (ECG), a blood test and a lumbar puncture (where a small amount of spinal fluid is collected using a thin needle).
2. Surgical procedure
- You will visit a specialist neurosurgical center to meet with a study neurosurgeon, who will discuss the surgical procedure with you and run a few more tests to check that you are ok to proceed with the surgery.
- During the surgical procedure, AVB-101 will be slowly delivered into the brain through thin needles called catheters. You will be under general anesthesia the whole time and unaware of the procedure taking place.
- After the surgery you should be up and walking within a few hours but will remain in hospital at least overnight as a precaution, for further monitoring and care. You will return home when you and the study doctor feel that you have recovered well enough to do so, which may be the next day or a few days after.
3. Follow-up visits
- After the surgical procedure to deliver AVB-101 has been completed, you will attend regular follow-up visits at your local neurology center to have your health monitored and to measure the effects of AVB-101 on your progranulin levels and symptoms of FTD.
- Follow up visits include the following assessments (however, not all assessments will be done at every visit): physical and neurological exams, questions about your FTD symptoms and any medications you currently take, imaging of your brain (MRI), a heart test (ECG), a blood test and a lumbar puncture.
- You will be followed up for a total of 5 years after the surgery, with 8 follow-up visits in the first year after the procedure. Following this, visits will occur once every 6 months for the next 4 years.
- To help support you, a caregiver (e.g. your spouse, partner, relative or friend) will accompany you to all study visits, including surgery.
INFORMATION ON CLINICAL SITES AND CONTACT INFORMATION
A Study to Evaluate Nabilone for Agitation in Frontotemporal Dementia
Researchers at several sites across Canada, led by Dr. Simon Ducharme, are conducting a study to see if a medication named nabilone, taken by mouth, can help reduce restlessness and agitation in people with Frontotemporal Dementia (FTD), including bvFTD and PPA. They are inviting people who are thought to have FTD and are experiencing these challenging behaviors to participate. The aim is to see if this medication can provide some calm and comfort compared to a dummy pill (placebo) that doesn’t contain any medicine.
You, or someone you care for, may be able to take part if you/they:
- Are over 18 years of age
- Have symptoms of FTD
- Experience agitation, irritability, or aggression
- Have an available study partner
- Are living in Canada
For more information about the study and research sites participating in the study, visit https://clinicaltrials.gov/study/NCT05742698?term=NCT05742698&rank=1
Nabilone has not been approved for FTD by the FDA or any other health authority.
The Gamma-Induction in FrontoTemporal Dementia (GIFTeD) Study is a randomized, double-blind, placebo-controlled clinical trial to assess the safety, tolerability, and efficacy of using transcranial alternating current stimulation (tACS) in FTD. Principal Investigator is Dr. Emiliano Santarnecchi at Massachusetts General Hospital and Harvard Medical School in Boston.
tACS is a safe, noninvasive way to stimulate the brain using weak electric currents. Electrodes are placed into a cap that is worn on the head. By synchronizing brain activity, tACS is aimed at increasing brain metabolism and boost cognitive performance, with the effects outlasting the stimulation period. The intervention is done 1 hour a day on weekdays for 6 weeks, for a total of 30 treatments.
There also is an in-person checkup at 3 months and a phone follow-up at 6 months. Additional tests include neuropsychological assessments, FDG-PET scans, MRI scans, EEGs, and blood draws before and after treatment.
The study seeks to enroll 50 people who have been diagnosed with behavioral FTD (bvFTD).
To be eligible, participants must be between 40 and 80 years old, stable on their medications for 30 days, and able to comply with study procedures.
There are 2 sites: Massachusetts General Hospital in Boston and the Santa Lucia Foundation in Rome, Italy.
The PROCLAIM study is researching the safety and effectiveness of an investigational one-time gene therapy that is designed to treat a form of FTD caused by a mutation, or change, in the gene progranulin (FTD-GRN). To be eligible to take part, you must be diagnosed with FTD-GRN, currently experiencing symptoms, and be between 30 to 80 years of age. PROCLAIM participants will receive a one-time injection of PR006 according to an escalating dose (low dose, medium dose, and high dose) cohort design. The duration of the study is 5 years. During the first year, patients will be evaluated for the effect of PR006 on safety, tolerability, immune reactions, biomarkers, and efficacy. Patient follow-up is for an additional 4 years to continue to monitor safety, biomarkers, and clinical outcomes. For more information, see the ClinicalTrials.gov listing.
This is a remote clinical trial being run by Dr. Thomas Neylan at the University of California San Francisco Memory and Aging Center.
The goal is to test the effect of 2 sleep medications on the treatment of sleep disruption in Progressive Supranuclear Palsy (PSP) without the need for in-person visits to a study site.
The study uses a crossover design so that each participant will be assigned to sequentially receive 2 specific FDA-approved sleeping medications and placebo throughout the 6-week course of the study.
Participants need to have a diagnosis of PSP, live anywhere in the United States, and have an available care partner to help provide information during the interviews.
All standard study assessments will be done over the phone or Zoom, with at least 1 call every week.
Participation in this study should not hinder you from taking part in any future studies or clinical trials.
The upliFT-D Study, sponsored by Passage Bio Inc., is an interventional study investigating the safety and tolerability of a gene therapy (PBFT02) for persons with frontotemporal dementia (FTD) who have a mutation in the progranulin gene (GRN). Gene therapy aims to replace the gene that is not working properly with a version of the gene that works normally.
Participants will receive 1 dose of PBFT02. Additional assessments include blood tests, medical exams, questionnaires, brain imaging, and lumbar punctures.
There is a 2-year main commitment with a 3-year safety extension for a total of 16 visits over 5 years.
Eligible participants are
- diagnosed with FTD-GRN,
- between 35 and 75 years old,
- experience FTD symptoms,
- have a reliable study partner, and
- live in the community.
Travel reimbursement is available.
For more information, visit the study listing on ClinicalTrials.gov.
Veri-T is a phase 1 randomized, double-blind, placebo-controlled study of the safety and efficacy of the drug verdiperstat in persons with semantic variant primary progressive aphasia (svPPA) due to frontotemporal lobar degeneration with TDP-43 pathology (FTLD-TDP).
The study will test the effects of verdiperstat on cerebrospinal fluid (CSF) proteins, brain magnetic resonance imaging (MRI), and cognitive tests. The drug or placebo is taken orally twice a day for 24 weeks.
Monthly visits are made to a study site for 6 months. Tests are done before and after.
To be eligible you must:
- be between 18-85 years of age;
- have a svPPA diagnosis;
- be willing to undergo two lumbar punctures;
- be able to swallow pills; and
- have a study partner who spends at least 5 hours a week with you.
Target enrollment is 64 people. There will be 5 study sites across the United States. Currently, the University of California, San Francisco is recruiting.
Of the 883 respondents, 397 were spouses of someone with an FTD disorder and 285 were a biological family member. This was followed by 135 people diagnosed with FTD, 28 caregivers, and 8 friends.
The Connect2Caregivers Research Study is being done to develop a unique matching process for caregivers of persons living with dementia, such as Alzheimer’s disease, Lewy body dementia, and frontotemporal degeneration (FTD). This study will help researchers determine whether caregivers of persons with dementia would find a technology-based matching program valuable for locating another caregiver for peer-to-peer support, and if algorithmic matches are more beneficial than random ones.
During this 15-month study, participants will complete an online matching profile, use a web-based tool to meet other caregivers, complete surveys, and touch base with the study coordinator three times.
To be eligible you must be at least 18 years old, have access to the internet, and be a current or former caregiver who is, or has been, in a caregiving role for someone with dementia for at least three months.
Targeted enrollment is 355 caregivers.
For more information or to complete an eligibility screening, email email@example.com.
CareVirtue Planner Study
Researchers from Indiana University in collaboration with a small business, CareVirtue, recently received funding from the National Institutes of Health (NIH) to study whether a personalized legal and financial planning platform for family caregivers of people living with Alzheimer’s disease and related dementias is useful. They are currently looking for family caregivers to participate in this research study.
The study asks you to use CareVirtue Planner, a financial and legal planning platform that provides financial and legal planning education and support to family caregivers of people living with dementia on a laptop or desktop computer for 3 months, and to answer questions about your experience using CareVirtue Planner during and after your time using the platform. If you agree to participate, you will be compensated up to $150 and will be able to use CareVirtue Planner without cost for one year. At the end of one year, you will be able to opt into the paid version of CareVirtue.
To be eligible, participants must:
- Be a self-identified primary caregiver status for someone with Alzheimer’s disease or related dementias
- Have access to the internet and access to a laptop or desktop computer
- Be over the age of 18
If you are interested in participating or to learn more, please contact our study team led by Dr. Werner at firstname.lastname@example.org. Your email will not obligate you to take part in the research study. Your participation is completely voluntary, and you can change your mind at any time.
Family Caregiver Online Survey
Researchers at the University of Oregon are seeking volunteers for an anonymous online survey exploring the needs of individuals living with and caring for a family member with dementia. Participants may not benefit directly from taking the survey, but they would be contributing to research aimed at reducing difficulties associated with caregiving.
You may be eligible for this study if you:
- Are an unpaid caregiver for a family (or chosen family) member with dementia
- Have been caregiving for at least 2 months
- Live at home with the care recipient
- Are 18 years or older
- Complete a 30-minute survey
- Receive a $40 gift card
To learn more, please contact us at email@example.com or 541-346-7494.
Understanding of FTD has increased dramatically thanks to families who have been willing to donate tissue to research through brain donation when a loved one passes away. This is a complex and difficult decision for any family to make. If you are interested in learning more about tissue donation, please visit our Brain Donation page.
More Places To Find Studies
- The Association for Frontotemporal Degeneration posts a table with studies currently recruiting volunteers for the FTD disorders, AFTD-clinical trials listing.
- CurePSP posts listings of studies for families affected by PSP and CBS/CBD.
- Michael J. Fox Foundation for Parkinson’s Research lists studies and can help match patients with CBD and PSP to trials using the FoxTrialFinder.