Tips & Advice: Finding Answers – FTD Research and You

Tips & Advice: Finding Answers – FTD Research and You


When Damian McNamara, a staff writer for WebMD, learned that his cousin had been diagnosed with ALS and FTD due to a C9orf72 genetic variant, he began to wonder if he should undergo genetic testing. After all, his maternal grandmother and aunt also had ALS, and FTD research discovered that C9orf72 can cause either disorder, or both.

McNamara spoke with his siblings about genetic testing but got no clear answer. “If we test positive, what could we do about it? Would it be better to know or not know?” he wrote in a 2023 article. An older brother and another cousin warned him against genetic testing, concerned that a positive result would make it more difficult to get life insurance, long-term care insurance, or long-term disability insurance.

Then McNamara learned his cousin with ALS and FTD had enrolled in ALLFTD, an observational study with sites in the United States and Canada that examines how FTD progresses over time. Since all genetic testing results would remain confidential, he decided to enroll himself. Fortunately, McNamara tested negative for the C9orf72 variant. In his article, he said he has remained in ALLFTD as a healthy control to give researchers the opportunity to compare his data against that of people who are diagnosed which helps them better understand where they may be able to intervene in the course of FTD.

The more people who, like McNamara, volunteer as research participants, the more data researchers can collect. And the more we learn about FTD, the sooner we will achieve earlier and more accurate diagnoses, viable treatments, and one day, a cure. This is where you come in.

Everyone Can Participate in Research Studies

Eligibility criteria for the many active FTD-related studies differ, but there are opportunities for everyone to participate, whether they are diagnosed with FTD, care for someone with FTD, or have FTD in their family. Studies may ask participants to complete surveys, have MRI scans, or test experimental treatments.

Many of the current studies are testing experimental treatments for participants with specific types of FTD — those caused by variants in the GRN or C9orf72 genes. The good news is that what we learn from these studies will help everyone, including those who do not have one of these FTD types.

Some people worry that participating in research may not be safe. But there are laws, rules, and regulations in place to protect research participants’ safety, privacy, and confidentiality. All research studies require informed consent, which gives each person the details of a study before deciding if participating is right for them.

Benefits of Participating

  • You take an active role in your own care that could potentially improve your condition or quality of life.
  • You gain access to interventions, specialists, or assessments that may not otherwise be available.
  • You learn more about your disease through the results of any tests you may undergo as part of the research.
  • You help future generations by increasing our understanding of how to diagnose, prevent, treat, or cure FTD.

The first step to participating in research is finding the right study for you, which may involve talking with a genetic counselor who can help you understand your risk of familial FTD and help you decide what type of genetic testing might be right for you and your family. A genetic counselor will walk you through the process, identify questions to consider, and help identify the appropriate clinical study, if available, based on your results. 

AFTD encourages everyone affected by FTD to join the FTD Disorders Registry, an online database that collects information about frontotemporal degeneration from participants. The collected information helps researchers better understand FTD, which allows them to plan research studies to develop new tools and treatments. It can also connect you to research opportunities as new clinical trials emerge. Care partners, caregivers, and other family members and friends are encouraged to join. 

You may be eligible to participate in ALLFTD, a large-scale observational study. ALLFTD’s goal is to prepare for treatment trials in FTD by learning the best clinical measurements and biomarkers for following people with FTD and for indicating when someone is at high risk of developing it. This information – data, images, and samples – is shared with other researchers to further the collective knowledge of FTD.

Another multi-site, large-scale trial is GENFI. With centers across Europe and Canada, GENFI is seeking to understand more about genetic FTD, particularly in participants with GRN, MAPT, and C9orf72 genetic variants. 

AFTD’s Studies Seeking Participants page includes many other studies in the U.S. and Canada that are actively recruiting. You can find a clinical trial that suits your needs on the Studies Seeking Participants page or on the bottom of the Clinical Trials page

Finally, you can help scientists develop treatments and diagnostic tools targeting the microscopic changes that cause FTD by signing up for brain donation. When someone volunteers for brain donation, their family can get a report of findings and a definitive diagnosis.

AFTD and the scientific community are working to understand, treat, and cure FTD, but we cannot do it without you. Working together, we can develop solutions so that one day FTD is a disease of the past.

To learn more about participating in FTD research, download AFTD’s new fact sheet.





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