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Understanding Your Genetics

OVERVIEW

Your genes can provide important information.

Frontotemporal dementia (FTD) may run in your family. Genetic testing and counseling can identify whether you or your family member have an FTD gene mutation and what that means.

Genetic testing can examine your DNA for changes or mutations in genes that are associated with FTD.

Receiving genetic testing is a very personal decision that can give you information about your level of risk for familial (hereditary) FTD.

Before you determine whether genetic testing is right for you, consider discussing with your doctor and your family about how this could impact you and those you care about. There are professionals who can help you understand the impact of genetic testing, such as genetic counselors and advocacy groups.

 

Genetic forms of FTD

There are genetic (inherited) and nongenetic (not inherited) forms of FTD. Genetic forms of FTD—when FTD is passed from parent to child—are the result of mutations, or changes, in a gene.

 

It is never too early or too late to learn about options.

When a family member has FTD due to a genetic mutation, you may wonder if you have inherited it. You may want to meet with a genetic counselor to learn more about your options, then decide if you want testing now, later, or never. Or if you or a person you are caring for has been diagnosed with FTD, learning if it is inherited could provide helpful information for you and your family. Watch this short video to learn about genetic counseling and testing so you can make an informed decision.

Learn about genetic counseling and testing
A parent with an FTD-causing gene mutation has a 50% chance of passing that mutation on to their child.
Approximately 30%-40% of FTD is caused by one of three types of the gene mutations below and you may want to consider genetic testing for FTD. Click on each one to learn more.
FTD-GRN
FTD-C9orf72
FTD-MAPT

Genetic testing and counseling.

Genetic testing can:

  • Identify an FTD gene mutation

Genetic counseling can help you and other family members:

  • Understand the genetic testing process

  • Understand how genetics contribute to disease

  • Decide on whether to get tested

  • Decide who should know the results of the testing, since this information can provide relief and/or anxiety

As part of the process, the genetic counselor may:

Provide pretest counseling
Before the test, the counselor may give an overview of the genetics of FTD. They will also explain the benefits and limitations of genetic testing.

Offer genetic testing
Your doctor or a counselor can help you obtain genetic testing which may be done by collecting a sample, such as a saliva or blood specimen.

Review the results
The counselor can go over the test results and discuss the potential outcomes for you and your family members.

Identify family members
As a final step, the counselor can help identify other family members who may be at risk for FTD and could benefit from genetic testing.

Genetic counseling may also include:

  • Education about genetic testing, disease management and prevention, and available resources

  • Explanation of your medical history, results, and risk for disease

  • Information on how the results could impact your job and insurance

  • Advice on how to discuss the results with your family

CLINICAL RESEARCH

Hope for the future.

While understanding genetics of FTD is important, it’s just a piece of a much bigger puzzle. A significant step in moving our understanding of FTD involves ongoing research, where experts are working hard to gain a deeper understanding of FTD and potential new ways to help manage and, possibly, help treat FTD. One way to contribute to the future is through participation in clinical research studies.

Clinical research studies aim to improve our knowledge of health and disease. They serve as a foundation for progressing medical knowledge and patient care.

Clinical research studies:

  • Explore various aspects of health, from how to prevent diseases, to how we diagnose them, to how we might treat them

  • Help us understand how diseases develop, how they progress and what patterns they might follow

  • May take the form of a completing a survey, giving a specimen, or participating in an observational study, where an individual is followed over time

A clinical trial is one type of clinical research study. If you or someone you know has an FTD gene mutation, you may be eligible to participate in a clinical trial.

Clinical trials:

  • Can help researchers understand whether an investigational treatment is safe and
    effective for a specific disease or health condition.

  • Are independently evaluated by regulatory agencies such as the U.S. Food and Drug
    Administration (FDA) before an investigational treatment can become available through
    your physician by prescription.

  • May require healthy participants as well as participants with a diagnosed disease.

  • Contribute to the discovery and advancement of new medicines.

In order to qualify for a clinical trial—and a potential path forward—
you may need to have genetic testing, which may be available at no-cost to you.