Research participation is essential for advancing our understanding of MAPT FTD. While there are currently no clinical trials for MAPT FTD, the research in these longitudinal studies will be key to our search for a cure. This comprehensive guide outlines opportunities for all members of MAPT families, regardless of symptom or genetic status. For further questions, please contact us at hello@curemaptftd.org.
Asymptomatic MAPT Mutation Carriers If you carry a MAPT mutation but haven't developed symptoms, you're eligible for multiple research opportunities. Studies show that structural brain changes can begin years before symptoms appear, making presymptomatic carriers valuable participants for understanding disease progression.
Untested & At-Risk Family Members Family members who haven't undergone genetic testing but have a parent, sibling, or other first-degree relative with MAPT FTD can participate in numerous studies. You don't need to know your genetic status to contribute to research.
Negative Carriers (Non-Carriers) Family members who test negative for MAPT mutations serve as crucial controls in research studies. Your participation helps researchers understand the differences between carriers and non-carriers, making your contribution equally important.
Caregivers and Care Partners Current and former caregivers, spouses, and care partners are eligible for specialized caregiver studies and general FTD research. Research shows FTD caregivers face unique challenges compared to other dementias, making your experiences vital to understand.
Getting started: First steps for new families
Join the FTD Disorders Registry The FTD Disorders Registry is your gateway to research participation. Registration is simple and free. Anyone affected by FTD can join. To participate in research studies through the Registry, you must be a U.S. or Canadian resident, 18+ years old. Register here
Consider genetic counseling & testing If you're unsure about your family's specific FTD mutation, you might consider genetic testing. This is a personal decision, and you may want to speak with a genetic counselor first. They can help you understand your family history, discuss what test results could mean, and support family conversations about genetics. For more information on genetic testing options, click here.
Connect with us & complete our Family Intake Form Cure MAPT FTD has a family intake form which we collect from new members. It stores your de-identified information, such as mutation type, number of positive mutation carriers in your family, known generations of impacted persons, and more. We use this form to understand our community, so we can better advocate for the necessity of offering clinical trials for MAPT mutation carriers. This the only way we can get an accurate and up to date count of the number of MAPT FTD persons around the world. To complete our Family Intake Form, send an email expressing your interest to hello@curemaptftd.org
Major research studies for MAPT families
ALLFTD Study (North America) The ALLFTD study is a comprehensive, long-term research effort across North America that enrolls people affected by or at risk for frontotemporal degeneration— including symptomatic patients, asymptomatic mutation carriers, and family members— to better understand disease progression through annual evaluations, brain imaging, and biomarker collection. Participating helps advance the search for effective treatments, offers expert clinical assessments, and connects families to leading research and support communities. Learn more
GENFI (Europe & Canada) The Genetic Frontotemporal dementia Initiative (GENFI) is a group of research centers across Europe and Canada with expertise in familial frontotemporal dementia (FTD), and is co-ordinated by Professor Jonathan Rohrer at University College London. The aim of the study is to learn more about genetic FTD. Study sites are available across the UK, Netherlands, Belgium, France, Spain, Portugal, Italy, Germany, Switzerland, Sweden, Denmark, Finland, Croatia, Serbia, Turkey and Canada. Learn More
ReDLat (Latin America) The ReDLat consortium is an international research group working to better understand and find new ways to treat dementia, including all types of frontotemporal degeneration (FTD), in people from many different backgrounds. The study has sites across Latin America—including Argentina, Brazil, Chile, Colombia, Mexico, and Peru—and works together with leading research centers in the United States and Ireland. ReDLat is an observational study, which means researchers regularly follow and assess people with FTD to learn how the disease changes over time. Learn More
FRONTIER (Australia) The FRONTIER Research Group is the largest specialist frontotemporal dementia (FTD) clinic in Australia. Since 2007, they have specialized in the diagnosis, prognosis, and care of people with FTD and related conditions. Learn More
For specialized studies, please refer to the FTD Disorders Registry for the latest studies you may be able to join
Why should you join a study?
Joining a longitudinal study gives you access to expert medical evaluations, helps researchers discover early signs and progression of FTD, and keeps you connected to the latest developments in the field. Your participation is especially important because—while there are currently no clinical trials for MAPT—these studies lay the groundwork for future treatments and offer support and connection to other MAPT families.
For participants:
Access to expert medical care and evaluations
Potential early detection of changes through regular monitoring
Connection to the research community and other families
Contribution to developing treatments for future generations
Travel reimbursement often provided
For families:
Better understanding of the disease progression in your family
Access to genetic counseling and testing
Information about emerging treatments and trials
Curious to learn more?
We send monthly newsletters to keep you informed on the latest MAPT information. From research updates, to FTD market news, to caregiver tips and more, we're keeping the MAPT community informed.
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