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Did you know that 15-20% of patients with Frontotemporal Degeneration (FTD) have an identifiable genetic cause?1,2
Knowing your genetic status is important because a growing number of clinical trials require a genetic diagnosis in order to participate.

The Progranulin Information Navigator is your guide to clinical trial participation and genetic testing.

Dementia, Psychiatric disease, Alzheimer’s, ALS ... FTD?

FTD is frequently misdiagnosed.  It can take years, and several misdiagnoses, before a diagnosis of FTD is established.  Some of the difficulty in diagnosing FTD is caused by the overlap in symptoms among FTD, psychiatric disease, and other forms of dementia. There are several subtypes of FTD, and specific symptoms depend on the regions of the brain impacted by disease. Unique features associated with some forms of FTD include:

  • a young age of onset, ranging from 30-60 years, and
  • changes in personality, including apathy and impulsivity. Individuals may struggle with decision-making, movement, speaking or language comprehension.

Consider talking with your doctor about whether FTD could be the cause of your symptoms or your loved one’s symptoms.

Participating in research helps
advance potential treatments

Currently, there are no FDA-approved treatments for FTD.  Most individuals with FTD are provided with behavioral and environmental interventions to manage symptoms. However, there are a number of active research studies evaluating new potential treatments. 

Participating in research provides an opportunity to help scientists
better understand FTD and to advance potential treatments.

Learn More About Participating in Research

What is progranulin and
how is it related to FTD?

What is progranulin and how is it related to FTD?

An estimated 5% of individuals with FTD have a variant in the progranulin gene (GRN).1 Genetic variants, or mutations, are like “typos” in the instructions that genes provide for the body.  The GRN gene provides the instructions for how to make progranulin, an important protein that is present in the brain and other tissues.

Progranulin protein helps keep brain cells functioning normally as we age.  When the amount of progranulin in the body is low because an individual has a genetic variant in GRN, eventual degeneration in the frontal and/or temporal region of the brain may occur and symptoms of FTD may develop.

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Keep up-to-date on the latest research and new advancements

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Interested in FTD genetic testing?

You may be eligible for FREE genetic testing
and counseling

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