Our Research
Recognizing the profound impact an FTD diagnosis has on individuals and their families, our mission is to promote clinical studies aimed at finding a cure for the disease. Our ongoing efforts involve examining the global prevalence of FTD and building a global network of FTD patients and researchers to advance towards a therapeutic cure. At present, our attention is directed towards genetic forms of FTD, where the underlying cause is more discernible compared to sporadic FTD. As our understanding of FTD evolves, alongside technological advancements, we hope to broaden our research scope to encompass therapeutic treatments for sporadic FTD.
Your participation matters!
Gathering information about a disease is difficult when the prevalence is rare. Research and clinical trial participation of FTD-diagnosed individuals and asymptomatic mutation carriers and families is critical for many reasons:
- Advancing scientific understanding.
Patient and family participation in research provides critical samples and clinical data that can lead to a better understanding of disease mechanism, progression, and variability.
- Developing treatments.
Patient and family participation in research ensures that there is enough data available to develop and test new therapies and improve treatment protocols.
- Personalized medicine.
Patient and family participation in research provides knowledge regarding the often complex genetic and environmental factors that affect disease onset and progression, which can allow for more personalized treatment plans.
- Patient-centered care.
Research participation helps ensure that studies focus on outcomes that are most important to affected individuals and their families.
- Policy and advocacy.
Patient and family participation in research can help raise awareness about the disease and its impact, which may lead to better-informed policies and increased disease support from the greater community.
Examples of FPI Investigated Studies
Examples of studies investigated collectively by the FPI include:
- Age of -onset and -death in genetic FTD, along with disease duration.
- Symptom onset proximity, using a biological test.
- How genetic FTD changes over time, using a variety of clinical tests and biomarkers.
Active Research Projects
In addition, we are engaged in diverse research projects aiming to explore:
- Brain changes occurring in individuals who have developed symptoms of disease.
- The possible neurodevelopmental effects of genetic FTD.
Summaries of these studies, and other work completed by the FPI, can be found on our FPI Projects page.
Patient Advocacy Groups and Relevant Resources
