No-Cost Genetic Counseling and Testing Available for Frontotemporal Dementia

InformedDNA is providing no-cost genetic testing and counseling to patients with Frontotemporal Dementia (also known as frontotemporal degeneration or FTD).

FTD is the most common form of dementia in people younger than 60 years old. Approximately 30% of all FTD is hereditary (i.e., runs in families) due to an inherited gene mutation (also known as a “pathogenic variant”). Genetic testing is an important step for patients with FTD to determine if their disease is the result of a gene mutation. Learning whether FTD is caused by a genetic mutation may enable clinicians to intervene sooner and evaluate your treatment options.

The three genes most commonly involved in hereditary FTD are progranulin (GRN), C9orf72 and MAPT. This testing program offered by InformedDNA includes these 3 genes, as well as 15 other genes associated with hereditary dementias.

Adults who have been diagnosed with FTD by a doctor (such as a neurologist) are eligible for genetic counseling and genetic testing at no cost through this program. Unaffected family members are eligible to participate in the program if they have a close relative (parent, sibling, adult child) with a GRN gene mutation.

Healthcare Providers

Patients and Caregivers
Or, call: 888-959-2028

How Genetic Counseling Works

The genetic counselors at InformedDNA working on this program are highly trained in hereditary neurological conditions. As part of this program, individuals will receive initial and post-test genetic counseling over the phone.

  • At the initial appointment, the genetic counselor will:
    • Collect the individual’s medical history and a 3-4 generation family history
    • Discuss the genetics of FTD
    • Review the benefits and limitations of genetic testing
  • If the individual elects to proceed with genetic testing, then the genetic counselor will coordinate the test order and sample collection
    • Results will be available in approximately three weeks from when the lab receives the sample
  • At the post-test appointment, the genetic counselor will:
    • Review the individual’s genetic test result and implications for personal health and risks to family members
    • Provide a written summary of the discussion and a copy of the genetic test result to the individual

Because our appointments occur over the phone, family members or friends may participate in the call, regardless of location.

This testing program is sponsored by Passage Bio. No personal identifying information of individuals participating in this genetic counseling and testing program will be shared with Passage Bio.

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