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.

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.

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.

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.

• 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.