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.