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 19 study locations in the U.S. and Canada. For more information, visit the ALLFTD website, visit the study listing on ClinicalTrials.gov, or email firstname.lastname@example.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.
The University of California, San Francisco, Dyslexia Center is conducting a new study to better understand the development of childhood cognitive abilities in families with frontotemporal dementia. We are recruiting children, ages 7 to 17, from families with a known gene mutation for frontotemporal dementia. The aim of the study is to learn more about the diverse brain, behavioral, and cognitive differences throughout the lifespan, and to assess neurodevelopmental trajectories in children whose families have a history of neurodegenerative disease. Participation in this study involves research visits to our center for a comprehensive battery of tests to measure cognitive ability, a clinical evaluation by a neurologist, a brain scan, and other tests. You can find more information here.
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. You can find more information here.
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 on 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: 1) understand progression in PPA and its link to brain changes, 2) increase awareness of PPA and better educate patients, families, and clinicians, and 3) 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, to determine its prevalence, and to better understand why people decide to have genetic testing. To be eligible, participants must have a diagnosis of FTD. At-risk individuals may also be eligible if they have a family history of FTD or a family history of a progranulin gene (GRN) mutation. All participants must be at least 25 years of age and live in the continental United States. Genetic counselors at InformedDNA will offer genetic counseling and assist with the testing. 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 here.
The Qualitative Work in Progressive Supranuclear Palsy (PSP) Study, a collaboration between Modus Outcomes and Rainwater Charitable Foundation (RCF), is a non-interventional, descriptive, study that seeks to better understand the patient and caregiver experience. PSP-diagnosed persons and their caregivers will be recruited as dyads, i.e., together, for virtual interviews. Those diagnosed must have had a symptom of PSP in the past 2 to 8 years, be between 40 and 80 years old when the first PSP symptom appeared, able to speak and understand English, do 1-hour interviews, share medical records about their PSP diagnosis, and visited a movement disorder specialist at least twice. Caregivers must be 18 or older; able to speak, read, and understand English; do 1-hour interviews; spend at least 2 hours daily in direct contact with the PSP-diagnosed person; supervises and has detailed knowledge of PSP-diagnosed person’s cognitive, functional, and emotional states as well as personal care; and have been with the PSP-diagnosed person for most of the disease’s progression to report on early symptoms. For more information, visit the Research page on RCF’s Tau Consortium website, call Gerrit Vandenberg at 515-231-3527, or email him at email@example.com.
The FOXY study is assessing the use of a medication called oxytocin in people who have a diagnosis of frontotemporal dementia (FTD). Oxytocin is a hormone naturally found in the brain of men and women. It appears to have important roles related to social behavior. In this study oxytocin is given as a nasal spray. To take part in the FOXY Study you must be between 30-80 years of age; have a diagnosis of behavioral FTD, semantic dementia, or progressive non-fluent aphasia by a physician; lost interest in your usual activities; and have someone who can be your study partner to accompany you to all study visits and help you to administer the study drug twice daily. For more information, email Kristy Coleman at CognitiveNeurology@sjhc.london.on.ca or visit the study listing on ClinicalTrials.gov.
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. tACS is a noninvasive way to stimulate the brain using weak electric currents. Electrodes are placed into a cap that is worn on the head. This 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 and behavioral assessments, PET scans, MRI scans, EEG, 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: Beth Israel Deaconess Medical Center in Boston, Massachusetts, and the Santa Lucia Foundation in Rome, Italy. For more information, contact Megan Hoffman at 617-667-9088 or firstname.lastname@example.org or visit the study listing on ClinicalTrials.gov.
INFRONT-3 is a phase 3 clinical trial to study if increasing progranulin levels after treatment with AL001 will delay the onset of symptoms or slow disease progression when compared to a placebo (a solution that contains no active AL001 drug). Participants need to have a confirmed progranulin gene mutation, and either be diagnosed with FTD or at risk of developing FTD symptoms as evidenced by a biomarker. The study drug (AL001 or placebo) will be administered every four weeks by an intravenous (IV) infusion. Assessments will include regular medical examinations, blood tests, brain imaging, and completion of questionnaires. AL001 has not been approved by the FDA or any other health authority approval around the world. You can find more information about the INFRONT-3 study and participating sites by calling 1-833-FindFTD (1-833-346-3383), going to the Alector INFRONT-3 webpage, or visiting ClinicalTrials.gov.
The study is a randomized, placebo-controlled clinical trial being run by Dr. Edward Huey at Columbia University Medical Center. It aims to test low-dose lithium carbonate as a treatment for behavioral symptoms of FTD. Participants need to have a diagnosis of FTD, PPA, or Semantic Dementia and need to be accompanied by a care partner who can provide information about the patient during interviews. The study lasts for 12 weeks, with clinic visits every two weeks. For more information, see the ClinicalTrials.gov listing.
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 Phase 2a study seeks to learn whether TPN-101 can reduce the damage to nerve cells and improve the symptoms of persons diagnosed with frontotemporal degeneration (FTD) caused by a C9ORF72 mutation, when compared with a placebo. Participation involves taking oral capsules once a day and visiting the clinic for assessments, blood tests, and lumbar punctures. Eligible participants have a mutation in the C9ORF72 gene and a clinical diagnosis of FTD with any of the following presentations: mild cognitive impairment, mild behavioral impairment, mild cognitive/behavioral impairment, behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), amnestic syndrome, or FTD-ALS. Target enrollment is 20 people with FTD and 20 with ALS. Currently, there are 10 study locations in the United States and 10 in Europe. For more information, visit the study listing on ClinicalTrials.gov.
TPN-101-PSP-201 is a Phase 2a clinical trial that seeks to evaluate the safety and tolerability of TPN-101 and its effect on biomarkers of neuroinflammation and neurodegeneration and on clinical symptoms in persons diagnosed with progressive supranuclear palsy (PSP). Volunteers will be randomly assigned to receive TPN-101 or placebo for 24 weeks, followed by everyone receiving TPN-101 for an additional 24 weeks. Visits to the study site are at weeks 2, 4, 8, 12, 18, 24, 26, 32, 40, 48, and 52 for clinical and neurologic testing, safety assessments, and blood draws. Participants will have three lumbar punctures during the year of the study. To be eligible, participants must be diagnosed with PSP and have experienced symptoms for at least 1 year but no more than 5 years. They also must bring a study partner. Target enrollment is 40 people. Currently, there are 11 study locations in the United States. For more information, visit the study listing on ClinicalTrials.gov.
This remote clinical trial being run by Dr. Thomas Neylan at the University of California San Francisco Memory and Aging Center, has been expanded to include residents from across the United States. The goal is to test the effect of two 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 two specific FDA approved sleeping medications and placebo throughout the six-week course of the study. Participants need to have a diagnosis of PSP and an available care partner to help provide information during the interviews. All standard study assessments will be done over the phone, with at least one phone call every week. You can find more information about the Sleep Study here.
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 one dose of PBFT02. Additional assessments include blood tests, medical exams, questionnaires, brain imaging, and lumbar punctures. There is a two-year main commitment with an optional three-year safety extension for a total of 16 visits over five 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.
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.
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.