The FTD Disorders Registry is a powerful tool for anyone interested in helping advance FTD science, including people living with FTD, current and former care partners, their family members and close friends, and healthcare professionals. The Registry maintains an extensive, up-to-date list of studies recruiting participants, and connects registrants with studies they are eligible for. The Registry also collects self-reported data from participants that researchers can use to better understand the needs and experiences of people impacted by FTD.

The Registry lists FTD-related studies that are actively recruiting, grouping them into the following categories:

• Observational Studies (Natural History or Longitudinal) – An observational study evaluates people without introducing any type of intervention. In FTD, researchers use natural history and longitudinal studies  to track persons diagnosed over time in order to understand how the disease naturally progresses.

• Treatment Studies – This type of study, sometimes referred to as a clinical trial, examines the safety and effectiveness of  a specific intervention for FTD. Treatment studies may evaluate a drug, a diagnostic tool, or a non-drug intervention.

• Caregiver Studies – Caregiver studies involve current and former care partners to better understand the caregiving experience and examine ways to improve the their quality of life. Caregiver studies can be both observational, where there is no intervention, or treatment studies, where researchers determine if a type of treatment has meaningful benefit to care partners.

• Tissue Donation – Brain donation provides researchers with access to samples that can be used to study the deeper mechanisms of FTD that aren’t observable during life. Scientists use brain tissue from people with and without FTD to examine the microscopic pathology that causes FTD.