Ways to Participate

Participate to Help Drive Breakthroughs in FTD Research

Scientists are closer than ever to breakthroughs that will bring meaningful change to families facing FTD. Participation from the AFTD community makes their work possible!

Join the FTD Disorders Registry.

Share your FTD insights and learn about research opportunities specific to you at FTDregistry.org.

Participate in clinical trials.

Today, the most opportunities are for families with a specific type of FTD, such as Progressive Supranuclear Palsy or FTD caused by progranulin (GRN) or C9orf72 gene variants. However, there are opportunities for all to participate in research!

Seek genetic counseling.

Find out how genetic counseling can help you learn about familial FTD and see if genetic testing is right for you.

Enroll in a brain donation program.

People with and without an FTD diagnosis can help scientists target the microscopic pathology that causes this disease. See the steps on AFTD’s Brain Donation webpage.

Determine your eligibility for ALLFTD or GENFI.

Observational studies such as ALLFTD (allftd.org) or GENFI (genfi.org) help scientists understand the natural course of FTD.

Share your story.

Help scientists understand the diverse values, priorities, and concerns of people directly impacted by FTD so that research studies are designed in a way that aligns with what is needed by people living with FTD.

If you are interested in sharing your personal FTD journey with researchers, email Dr. Shana Dodge, AFTD’s Director of Research Engagement, at sdodge@theaftd.org or sign up via AFTD’s Take Action and Volunteer webpage.

Why Participating in Research Matters

FTD research is gaining momentum, with more opportunities than ever for everyone to participate in a study that can lead to a breakthrough. The National Institutes of Health (NIH) has doubled the number of FTD projects they have funded from a decade ago, and a growing number of private companies are investing in finding treatments for different forms of FTD.

We need all hands on deck – as successfully testing these treatments will require research volunteers from across the US and around the globe.

Who can participate in research studies?

Everyone! While each given study has specific criteria for who can participate, there are opportunities for everyone. Each FTD research study brings us closer to treatments and better care for all people with FTD. Participation can vary from completing surveys, to undergoing MRI scans, to participating in studies testing experimental medicine.

Why is there so much emphasis on people with genetic variants?

Many of the studies testing experimental medicines today are looking for participants specific types of FTD, such as FTD caused by variants in the GRN and C9orf72 genes. Additional studies focused on other genes and sporadic forms of FTD are in the planning stages. What is learned in these studies will benefit everyone – including those who do not have one of these FTD types.

Why should I consider genetic counseling?

Talking with a genetic counselor can help you better understand your risk of familial FTD and help you to determine if and what type of genetic testing might be right for you and your family. They will walk you through the process, identify questions for you to consider, and help to identify clinical trials that you could be eligible for based on your results.

Is participating in research safe?

Many laws, rules, and regulations are in place to protect research participants’ safety, privacy, and confidentiality. Informed Consent is always required, which means that each person is given details of a study before deciding if participation is right for them.

Benefits of Participating in FTD Research:

  • Take an active role in your own care that could potentially improve your condition or quality of life.
  • Gain access to interventions, specialists, or assessments that may not otherwise be available.
  • Learn more through the results of tests you may undergo as part of research.
  • Help future generations by furthering our understanding of how to diagnose, prevent, treat, or cure FTD.