Families & Advocacy Groups

Our Research

The primary objective of the FPI is to advance towards a therapeutic cure for FTD, with a specific focus on genetic forms 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.

Recognizing the profound impact a diagnosis of FTD has on individuals and their families, our mission is to promote clinical trials aimed at finding a cure for the disease. Our ongoing efforts involve examining the global prevalence of this condition and building a global network of FTD researchers.

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 combinations of different FTD tests and measures.

Summaries of these studies, and other work completed by the FPI, can be found on our X page.

In addition, we are engaged in diverse research projects aiming to explore:

Brain changes occurring in individuals who have developed symptoms of disease.
How FTD manifests in childhood.

Moreover, we are developing innovative digital tools and assessments such as iPad and mobile-based apps. We hope these will be employed in clinical trials to facilitate the monitoring of drug treatment effectiveness.

Patient Advocacy Groups

Patient Advocacy Groups

Participation Opportunities

The voices of participants and their families are central to our work. Our continued collaboration with study participants is committed to understanding their perspectives, thereby shaping the focus of our research and enhancing the design of clinical trials.

For those interested in understanding more about the FPI, or wanting to participate in one of the familial FTD cohort studies, please get in touch here.

Additional resources about FTD can be accessed through the Association for FTD (AFTD) and FTDtalk webpages including a glossary of related terms, while detailed information about ongoing studies is available at the FTD Disorders Registry.