No-Cost Genetic Testing

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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.

When participating in a research study that includes genetic testing, be sure to ask:

What genes are included in the test?
More than a dozen genes are associated with FTD (Greaves and Rohrer, 2019). Variants in three of these genes (C9orf72, GRN, and MAPT) cause the majority of familial FTD. Ask if those three genes, at a minimum, are included in the test. Ideally, the test will include all other genes that less commonly cause FTD.

Are there any key test limitations?
Testing done as part of a research study is designed to meet the needs of the research project, and therefore may not be comprehensive. Be sure to ask how the test differs from a clinical test (it may not differ at all) and what the test limitations are.

Is the test done in a clinical lab?
Sometimes genetic testing done for research purposes is not performed in a lab that meets clinical standards. Labs that want to return results to the participants must have CLIA (Clinical Laboratory Improvement Amendment) certification. In some cases, the initial testing is not performed in a CLIA-certified lab, but any positive result is validated in a CLIA-certified lab. Ask whether the test is performed or validated in a CLIA-certified lab.

Who gets the results?
Research studies are not obligated to give you the results and, in some cases, they may be prohibited from doing so. Ask who will receive results: You? Your physician? Anyone else?

Are there any specific privacy considerations?
Genetic testing is unique because it can provide information about what may happen in the future (when testing is performed on someone without symptoms) and because it provides information that could identify others in your family as being at risk for FTD. It is important to confirm who will have access to test results as part of the study records. Will the data have your name or other identifiers attached to it? How is your privacy maintained throughout the research study, and once the study ends? Researchers are almost always required to carefully protect the identity of participants and their genetic data, but it does not hurt to ask and confirm.

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.

When participating in sponsored genetic testing, be sure to ask:

Why is the sponsor paying for testing?
A pharmaceutical company might sponsor genetic testing to increase the number of people with a confirmed genetic diagnosis, find those who may be eligible for a clinical trial investigating a potential treatment, or understand how many people may be eligible for treatment once a drug has FDA approval. In some cases, the sponsor’s primary motivation may simply be to raise awareness or provide a service.

What does the sponsor get in return for paying for testing?
Sponsors need to be clear and transparent about the information they receive in exchange for providing no-cost testing. Your identifying information (such as your name) is not shared with the sponsor unless you have provided specific written consent. The sponsor may be given the names of the physicians who ordered the testing so they can talk to them about their study or any potentially approved treatment that results from it.

Other sponsors may require that you enroll in their registry or sign up for their mailing list to be eligible for free testing. By enrolling in a registry, you are giving the sponsor permission to contact you in the future. You can usually opt out of a registry or mailing list later, but you should understand what the obligations are before agreeing.

What genes are included in the test?
More than a dozen genes have been associated with FTD. Of these, three (C9orf72, GRN, MAPT) account for the majority of genetic FTD. Ask whether, at a minimum, all three of those genes will be included in the test.

If you agree to no-cost sponsored testing but not all relevant FTD genes are included, you can always choose to pay out of pocket, or bill insurance if additional testing is needed. If you have a known genetic variant in your family, you’ll need to determine whether the sponsored test includes that gene and can detect the specific familial variant.

If your family history includes other neurodegenerative conditions, genetic testing that includes additional genes may be recommended. Some sponsors will only pay for genetic testing for the gene or genes that are directly related to the treatment they are developing.

Is genetic counseling included with testing?
Many, but not all, sponsored programs include pre-test and post-test genetic counseling at no charge. Genetic counselors are healthcare professionals with special training in genetics who can help you make an informed decision about proceeding with testing. Click here to learn what to expect from an initial genetic counseling session.

How to choose a sponsored genetic testing program

While sponsored testing programs are often similar, you can narrow your search by asking the following questions:

Is the program available to people with a family history of FTD but no symptoms?
Does it include pre-test and post-test genetic counseling at no cost?
Does it include at least the three major genes associated with FTD (C9orf72, GRN, MAPT)?
Is the program available to people outside of the United States?

For help determining which no-cost sponsored genetic testing program may be right for you or a family member, choose options from the interactive list below.

Find a No-Cost Genetic Testing Option

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

Are you located in the U.S.?

YesNo

Do you have a clinical diagnosis of FTD?

YesNo symptoms; family history only.No symptoms; biological relative with a GRN variant.

Consider (non-profit) Bluefield Project’s Progranulin Information Navigator

Open to individuals with a clinical diagnosis of FTD, and/or individuals (with or without symptoms) who have a biological family member with a known GRN variant.
Genes included are: C9orf72, CHMP2B, CTSF, FUS, GRN, MAPT, SQSTM1, TARDBP, TBK1, TIA1, TMEM106B, UBQLN1, VCP, CHCHD10, OPTN, HNRNPA2B1, UBQLN2, and CSFR1
Program managed by Probably Genetic
Genetic Counseling by Everly Health (pre- and post-test)
Psomagen administers testing (Variantyx administers testing for residents of NY state)
Results go to the person tested and their genetic counselor
De-identified patient information is shared with Bluefield Project (the non-profit sponsor) and may be shared with Probably Genetic’s customers and partners for research and commercial activities

Find out more about the Progranulin Navigator sponsored by the Bluefield Project.

Consider Passage Bio

Open to individuals living with FTD only
Genes included are: GRN, MAPT, C9orf72
Other genes: CHCHD10, CHMP2B, DCTN1, FUS, HNRNPA2B1, SQSTM1, TARDBP, TBK1, TREM2, UBQLN2, VCP
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 the FTD program sponsored by Passage Bio.

Consider Prevail Therapeutics FTD 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

Find out more about the FTD program sponsored by Prevail Therapeutics.

No programs are available for consideration at this time.

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 info@theaftd.org with any additional questions.

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No-Cost Genetic Testing

Consider (non-profit) Bluefield Project’s Progranulin Information Navigator

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FTD & Genetics Overview

Genes That Cause FTD

Why Learn My Genetic Status?

Genetic Counseling