Frontotemporal Dementia (FTD)

What is FTD?

  • FTD is a fatal adult-onset neurodegenerative disease affecting the frontal and temporal lobes of the brain, characterized by a decline in behavior, language, and executive function
  • FTD is one of the most common causes of early-onset dementia worldwide and estimated to affect ~60,000 patients in the US and ~110,000 patients across Europe
  • FTD is progressive, meaning symptoms rapidly worsen over time. Changes in behavior occur in the early stages of the disease and may include:
Stages of FTD symptoms
  • Symptoms of FTD are debilitating and often misdiagnosed as psychological illnesses
    • In elderly patients, symptoms may be mistaken for withdrawal or eccentricities, rather than symptoms of a neurodegenerative disease
  • In later stages of disease, FTD may progress into immobility, loss of speech, and inability to understand speech
  • On average, people with FTD live 8 years after the onset of symptoms

Though there are currently no disease-modifying therapies approved for the treatment of FTD, Passage Bio is exploring the therapeutic potential of elevating progranulin (PGRN) levels for the treatment of a genetic form of FTD

FTD has an important genetic cause

  • An estimated 25%-30% of FTD cases are inherited in an autosomal dominant manner—where only 1 copy of the mutated gene is enough to cause the disease
  • The most common causes of genetic FTD in inherited cases are mutations in the GRN, C9orf72, and MAPT genes
  • In 5%-10% of patients with FTD, the disease is caused by an inactivating mutation in the GRN gene, leading to a PGRN deficiency
Frequency of 3 most common mutations that cause genetic FTD in inherited cases

PGRN levels play a key role in FTD-GRN

  • FTD-GRN is a genetic form of FTD caused by a mutation that leads to deficiency of PGRN
  • Treatments that selectively elevate PGRN levels in people with FTD-GRN may slow or halt the progression of the disease
  • In preclinical models of neurodegeneration, elevation of PGRN levels has:
Restored lysosomal function icon

Restored lysosomal

Reduced pathology icon


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  • This suggests that achieving high PGRN levels in the central nervous system (CNS) may improve outcomes for people with FTD-GRN

Key partnerships for genetic testing

InformedDNA is a partnership that involves designing and supporting a genetic testing and counseling program that will be free of charge to patients in the US with frontotemporal disease.*†
Learn more at

InformedDNA icon

Prevention Genetics provides healthcare providers access to no-cost genetic testing for patients who are suspected of having FTD in all markets.
Learn more at

Prevention Genetics icon

*InformedDNA no-cost genetic testing and counseling is only available to US residents.

While the FTD sponsored testing programs are sponsored by Passage Bio, no personal identifying information of individuals participating in these genetic testing programs will be shared with the company.

Passage Bio believes in the power of elevating PGRN levels

Passage Bio is studying a potential genetic medicine for people with FTD-GRN in a clinical trial called upliFT-D. This genetic medicine is intended to deliver a functional GRN gene to elevate levels of PGRN in the brain

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People with FTD-GRN may be eligible for enrollment in the upliFT-D clinical trial. See eligibility requirements, questions and resources, and sign-up information for upliFT-D.