InformedDNA is providing no-cost genetic counseling and facilitating no-cost genetic testing for 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”). However, not all individuals with FTD have a known family history of FTD.
FTD genetic testing is an important step for all patients with FTD to determine if their disease is the result of a gene mutation. The three genes most commonly involved in hereditary FTD – the progranulin (GRN), C9orf72 and MAPT genes – are included in this testing program.
Adults who have been diagnosed with FTD by a doctor (such as a neurologist) are eligible for genetic counseling and genetic testing for FTD at no cost through this program.
Patients and Caregivers
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 FTD 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 for FTD 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.