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)
Current Studies
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.
For more information, visit the ALLFTD website, visit the study listing on ClinicalTrials.gov, or email info@allftd.org.
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.
To enroll, talk to the study coordinator at a participating ALLFTD site. For additional information, visit ClinicalTrials.gov.
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.
You can find more information here.
Learn More About Development in Families with Neurodegenerative Disease
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.
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.
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, at 203-785-5054 or 475-434-3901 or Yanghong.Yang@yale.edu.
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.
For more information, please see the clinical trials.gov listing or email the study team.
The Progranulin Gene FTD (PG FTD) Study, sponsored by Alector Inc., is an observational study to investigate the genetic background of individuals diagnosed with frontotemporal dementia (FTD). The purpose is to identify people at risk for or with genetic FTD.
The study will test for the progranulin gene mutation (GRN), the tau gene mutation (MAPT), and the C9 open reading frame 72 gene mutation (C9orf72).
Genetic counselors at InformedDNA will offer genetic counseling and assist with the testing.
Eligible participants must have a diagnosis of FTD, or have a family history of FTD or a progranulin gene mutation. Eligible participants cannot have a personal or family history of motor neuron disease (also called ALS) or other FTD-related gene mutations (e.g., C9orf72 or MAPT).
All participants must be at least 25 years of age and live in the continental United States.
Tests are performed by collecting an at-home buccal (cheek) swab.
This study will enroll up to 1,000 participants over 18 months.
There is no cost to participate.
You can find more information about this study by going to the study's webpage on Alector's website and InformedDNA's website.
Treatment Studies
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.
For more information, contact Julianne Reilly at 617-667-9088 or jrreilly@mgh.harvard.edu or visit the study listing on ClinicalTrials.gov.
INFRONT-3 is a phase 3 clinical trial studying the benefits and risks of AL001 (also called latozinemab), an investigational treatment in frontotemporal dementia (FTD) caused by changes (mutations) in the progranulin (GRN) gene.
The 96-week trial will study if latozinemab can slow down the disease when compared to a placebo (no drug).
The investigational drug or placebo will be given every four weeks through an intravenous needle. Assessments will include regular medical examinations, blood draws, brain scans, and questionnaires.
Eligible participants will have a GRN gene mutation and be diagnosed with FTD or they are at risk of developing FTD (other family members affected).
You can find more information about the INFRONT-3 clinical trial and study locations by calling 650-826-2454, emailing clinicaltrials@alector.com, or visiting the listing on ClinicalTrials.gov.
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.
You can learn more information on the study website or ClinicalTrials.gov.
Caregiver Studies
Connect2Caregivers
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 connect2caregivers@mayo.edu.
WeCareAdvisor Study for Caregivers of People Living With Dementia
This nationwide clinical trial will evaluate the efficacy of an online tool, WeCareAdvisor, to reduce caregiver distress, improve confidence managing behaviors, and reduce the frequency and severity of behavioral and psychological symptoms in people living with dementia.
Caregivers enrolled in the study will use the tool for either 3 or 6 months, depending upon group allocation. Telephone interviews will be conducted at baseline, 1, 3 and 6 months.
To be eligible, participants must
- be 21 years old or older;
- be the primary caregiver to a person with dementia for at least 6 months;
- manage at least 1 behavioral symptom;
- have an email account; and
- own a smartphone, tablet, laptop, or desktop computer that has access to the Internet.
Targeted enrollment is 326 people.
For more information, visit WeCareAdvisorStudy.com or contact study coordinators with Drexel University at 267-359-1111 or WeCare@drexel.edu.
Tissue Donation
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.
LEARN MORE ABOUT BRAIN DONATION
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.