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The FTD Disorders Registry helps to support clinical trials in all of the 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)
  • Frontotemporal Degeneration with Amyotrophic Lateral Sclerosis (FTD-ALS)

Current Studies

Click on the text link below to view more information about each of these studies:

ALLFTD (ARTFL LEFFTDS Longitudinal Frontotemporal Dementia)

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 info@allftd.org.

Learn More About ALLFTD

 

Treatment of Disturbed Sleep in PSP

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.

Learn More About Treatment of Disturbed Sleep in PSP

 

Progranulin Gene FTD (PG FTD) Genetic Counseling & Testing

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 FTD caused by a progranulin gene (GRN) mutation and better understand why people decide to have genetic testing for FTD. To be eligible, participants must have a diagnosis of FTD that includes a family history of dementia or a family history of a progranulin gene (GRN) mutation. 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 18 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 saliva sample. This study will enroll up to 500 participants over 18 months. There is no cost to participate. You can find more information here.

LEARN MORE ABOUT PG FTD STUDY

 

A Study to Evaluate Efficacy and Safety of AL001 in FTD (INFRONT-3)

INFRONT-3 is a phase 3 clinical trial to study if increasing progranulin levels after treatment with AL001 will delay 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) or visiting ClinicalTrials.gov.

LEARN MORE ABOUT INFRONT-3

 

PROCLAIM: A Study of PROO6 in FTD with Progranulin Mutations (FTD-GRN)

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.

LEARN MORE ABOUT PROCLAIM STUDY

 

Low-Dose Lithium for Treatment of Behavioral Symptoms in FTD

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.

Learn More About Lithium Treatment Trial

 

Human CNS Tau Kinetics in Tauopathies (TANGLES)

The TANGLES study is being conducted at Washington University in St. Louis’ School of Medicine. The goal of this study is to learn more about the metabolism (production and clearance) of tau in humans. Tau is a peptide that can develop tangles in neurons. Tau affects individuals with neurodegenerative disorders that have tauopathies. This study will allow us to better understand the role that the protein tau has in neurodegenerative disorders. Persons diagnosed with PSP, CBD, or FTD due to MAPT mutations are eligible. Biological family members of MAPT carriers are also eligible. You can find out more about TANGLES here.

Learn More About TANGLES Study

 

Genes, Brains, and Decisions

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. We will compare 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 either in the ARTFL or the LEFFTDS research studies, and you yourself do not have a diagnosis of dementia. You can find more information here

Learn More About Decision-Making Study

 

Language in Primary Progressive Aphasia

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.

Learn More About Language in PPA Trial

Email the Study Team

 

COMMUNICATION BRIDGE: SPEECH THERAPY FOR PPA

The Communication Bridge study at Northwestern University is an internet-based, speech therapy intervention for individuals with mild Primary Progressive Aphasia and their Communication Partner (spouse, relative, or close friend). The goal of the study is to understand how speech-language therapy affects communication abilities in people living with PPA. All study visits take place over the Internet in your home. The study lasts about one year and involves using a computer video-chat program. The computer will be provided for the length of the study. You will complete online evaluations and speech therapy sessions with a licensed speech-language pathologist, as well as home exercises on a personalized web-application designed for the study. You can find more information here.

Learn More About Communication Bridge Study

 

Development in Families with FTD

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.

Learn More About Brain Development in Families with FTD

 

Tissue Donation

Understanding of FTD has increased dramatically thanks to families who have been willing to donate tissue to research when a loved one passes away. This is a complex and difficult decision for any family to make. If you are interested in learning about tissue donation, there is help from AFTD here and from CurePSP here.

Tissue Donation - AFTD

Tissue Donation - CurePSP

 

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.