Speakers: Laura Mitic, PhD, Acting President, The Bluefield Project to Cure FTD
Please introduce yourself, including your name and your role at Bluefield.
Laura Mitic, PhD: Hi, I'm Laura Mitic, Acting President of the Bluefield Project to Cure FTD.
What is Bluefield's mission?
Laura Mitic, PhD: The Bluefield Project is a non-profit research foundation that was founded nearly 15 years ago with the goal of enabling the development of treatments for FTD. We fund academic researchers across the country and internationally as well as collaborative infrastructure initiatives to advance our understanding of what causes FTD and how to treat it. We have a particular focus on FTD caused by changes in the progranulin gene. Today, we are so encouraged that there are multiple promising experimental treatments being tested in the clinic.
What is the Progranulin Information Navigator?
Laura Mitic, PhD: We created the Progranulin Information Navigator in response to suggestions from family members of patients with progranulin- related FTD. We heard a need to collect relevant treatment trial information into one place with easy to read explanations about what participation entails, and a way to sign up to be informed when new treatment trials open. And we heard a desire to be able to access genetic counseling and testing when an individual thinks that they're ready. So we created a resource with all of those things. The Progranulin Information Navigator.
What do you wish everyone knew about the importance of clinical trial participation?
Laura Mitic, PhD: Our efforts at the Bluefield Project started in 2008, 2 years after the discovery that changes in the progranulin gene caused FTD. It's extraordinary that today, less than two decades later, we now see multiple companies testing novel experimental treatments for progranulin-related FTD. This represents an enormous investment of resources, of expertise, of money, dedication, perseverance. It couldn't have happened without the contributions of the many patients and their family members who have participated in research studies leading up to today. Now, we are at a pivotal moment. Participating in a clinical trial is the only way to know if experimental treatments will be effective. If they are, we can look forward to approved treatments in a future without progranulin FTD.
Why is genetic counseling and testing important for individuals and families impacted by FTD?
Laura Mitic, PhD: For those living with FTD, genetic testing can provide answers and possibly open new doors to participate in research and access experimental treatments for those related to a family member with genetic FTD. Genetic testing can enable them to predict their future risk of developing FTD. Genetic testing is a personal decision and it's not right for everyone. It's important that those considering testing understand how the discovery of a disease causing gene may affect them, including things like how it may impact their ability to get certain forms of insurance, working with a genetic counselor before testing is critical so that an individual can make the informed decision. That's right for them.
