Laboratory research has led to the development of targeted therapies that are designed to work specifically for individuals with certain genetic variations. When clinical trials are designed to test targeted therapies, genetic testing is often required to determine if someone is eligible to participate.
That’s where we come in. The Progranulin Information Navigator was created to raise awareness about GRN-specific clinical trials and to increase access to genetic counseling and testing for FTD-diagnosed individuals and family members of individuals with known GRN genetic variants.
Clinical trials are a specific type of medical research that test whether a new experimental medicine or treatment works well and is safe. There are multiple phases of clinical trials—earlier phases are focused on safety and later phases focus on whether the experimental medicine works and at what dose. Clinical trials follow a specific plan of action, called a protocol. The protocol says who can be in the study, what treatments will be tested, and how results will be measured.
Enrolling in a trial is a multi-step process that provides opportunities to ask questions and carefully consider whether you would like to participate, if eligible. The specific enrollment steps vary by trial and location, but in general the process involves:
Many of the clinical trials for FTD require participants to have a known genetic variant in one of the genes that causes FTD?
That’s why we are happy to provide access to free genetic counseling and testing to individuals diagnosed with FTD and to biological family members of individuals with a known GRN genetic variant.
The process is easy:
Genetic testing is a personal decision. Speaking with a genetic counselor can help you understand the risks and benefits of testing and answer your questions. There is no obligation to proceed with testing after meeting with a genetic counselor.
In this video, Betsy Hall shares her deeply personal journey with frontotemporal degeneration (FTD) and the GRN genetic mutation. After witnessing the impact of FTD on her mother and grandmother, Betsy made the decision to participate in clinical trials—an experience she describes as both empowering and essential in the fight for a cure. She discusses the importance of genetic testing, how it can provide clarity for families, and why research participation is a vital step toward future treatments. Watch to learn more about her perspective and the hope clinical trials bring to families affected by FTD-GRN.
637 Carolina St.
San Francisco, CA 94107
navigator@bluefieldproject.org
