Genetic testing is sometimes available at no cost through research studies such as the ALLFTD study and through sponsored third-party testing programs.

Genetic Testing as Part of a Research Study

Participation in a research study is always voluntary. Study participants will be given information about the study and asked to sign a consent form stating they understand what is expected of them as a participant, and the aims of the research study.

The activities involved may be tests (genetic tests, psychological tests, etc.), treatment with therapies (which can include drugs or interventions such as speech therapy), reporting of symptoms, or other activities.

The FTD Disorders Registry offers additional guidance and resources about research participation – find more by clicking here.

Typically, participants who enroll in a research study are not responsible for any costs.

Genetic Testing Sponsored by a Third Party

Sponsored genetic testing is paid for by a third party – typically a pharmaceutical company, but in some cases a patient advocacy group. Each sponsored testing program offers specific benefits (including being no-cost), but also has unique limitations that may influence your decision to use them. AFTD strongly encourages you to talk with a genetic counselor about whether genetic testing through a sponsored testing program is right for you and your family.

Your genetic counselor or healthcare provider can review the specifics of the sponsored genetic test, as each program may have special considerations.

Find a No-Cost Genetic Testing Option

These options are subject to change. They are current as of February 4, 2024.

  • Open to individuals living with FTD only
  • Genes included are: GRN, MAPT, C9orf72
  • Counseling by InformedDNA
  • Testing by Prevention Genetics
  • Results go to the person tested and their physician
  • De-identified patient information can be shared with Passage Bio
Find out more about Passage Bio's program.

  • Open to individuals diagnosed with FTD, with symptoms of FTD, and those who have a family history of FTD
  • Genes included are: GRN, MAPT, and C9orf72 (*Please note, these are the three most common genes associated with FTD. This test does not include several genes that are more rarely associated with FTD)
  • Counseling by Grey Genetics (pre- and post-test)
  • Gene by Gene administers testing
  • Results go to the person tested and their genetic counselor
  • De-identified patient information can be shared with Prevail

Based on the criteria you have shared, there are currently no no-cost programs known to AFTD available for your consideration at this time. Please return to this page to check back as no-cost testing programs evolve, or reach out to with any additional questions.