This site lists available observational research studies for the FTD community and interventional research studies for individuals with known genetic variants in the progranulin (GRN) gene. Please click on the links below to learn more about active studies.
The site is provided for informational purposes only, and is not intended to provide, or be a substitute for, medical advice, diagnosis or treatment recommendations. See full disclaimer.
The Site is provided for informational purposes only, and is not intended to provide, or be a substitute for, medical advice, diagnosis or treatment recommendations. See full disclaimer.
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Summary: The GENFI study is an observational study that aims to identify the earliest signs of FTD and track how it changes over time. Understanding early signs of disease will help researchers identify how well future treatments work and the best time to give them.
Summary: [18F]ACI-19626 is a new imaging tool being tested to see if it can find and bind to a disease-associated protein called TDP-43 in the brain. TDP-43 buildup is linked to several brain diseases, including FTD, ALS, and LATE.
Summary: AVB-101 is an experimental gene therapy for with people with frontotemporal dementia and genetic variants in the progranulin gene (FTD-GRN).
Summary: The UNICORN study is a comprehensive database of clinical, cognitive, imaging, and biological data from patients with neurodegenerative diseases (such as FTD, ALS, PSP, and others), their at-risk family members, and healthy adults.
Summary: The UNICORN study is a comprehensive database of clinical, cognitive, imaging, and biological data from patients with neurodegenerative diseases (such as FTD, ALS, PSP, and others), their at-risk family members, and healthy adults.
Summary: AVB-101 is an experimental gene therapy for with people with frontotemporal dementia and genetic variants in the progranulin gene (FTD-GRN).
Summary: The GENFI study is an observational study that aims to identify the earliest signs of FTD and track how it changes over time. Understanding early signs of disease will help researchers identify how well future treatments work and the best time to give them.
Summary: The UNICORN study is a comprehensive database of clinical, cognitive, imaging, and biological data from patients with neurodegenerative diseases (such as FTD, ALS, PSP, and others), their at-risk family members, and healthy adults.
Summary: [18F]ACI-19626 is a new imaging tool being tested to see if it can find and bind to a disease-associated protein called TDP-43 in the brain. TDP-43 buildup is linked to several brain diseases, including FTD, ALS, and LATE.
Summary: AVB-101 is an experimental gene therapy for with people with frontotemporal dementia and genetic variants in the progranulin gene (FTD-GRN).
Summary: AL001 is an experimental treatment designed to slow the progression of Frontotemporal Dementia in individuals with a known pathogenic progranulin gene (GRN) variant. This study is closed to enrollment after meeting its target enrollment.
Summary: VES001 is an experimental treatment for healthy individuals with a known pathogenic progranulin gene (GRN) variant designed to restore normal levels of the progranulin protein (PGRN) in the brain.
Summary: DNL593 is an experimental treatment that was designed to restore normal levels of the progranulin protein (PGRN) in the brain in people with symptoms related to FTD who also have a genetic variant in the progranulin gene (GRN).
Summary: PBFT02 is an experimental gene therapy for people with frontotemporal dementia and genetic variants in the progranulin gene (FTD-GRN).
Summary: LY3884963 is being developed as a single-dose gene therapy for patients with frontotemporal dementia with GRN mutations (FTD-GRN).
Note: This page is specifically focused on clinical trials for individuals with FTD caused by progranulin genetic variants. To find out if you are eligible for free genetic counseling and genetic testing click here.
To find clinical trials related to other forms of FTD please visit: www.clinicaltrials.gov