Frontotemporal dementia (FTD), also referred to as Frontotemporal lobar degeneration (FTLD), is a clinically and pathologically heterogeneous group of non-Alzheimer dementias characterized by progressive atrophy of the frontal and/or temporal lobes.
FTD - At-A-Glance
- FTD is the most common form of dementia for people under age 60
- Onset often occurs in a person’s 50s or 60s
- FTD shares genetic causes and often co-occurs with ALS, a motor neuron degenerative disease
- No known treatments prevent or stop FTD
NINDS supports projects covering all aspects of FTD research. Some of our bigger initiatives are listed here:
ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
The ALLFTD represents the merger and continuation of two previous studies (Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS)). The ALLFTD consortium is a group of academic medical centers in the USA and Canada conducting longitudinal studies of both sporadic and familial FTLD, including patients with Corticobasal Degeneration Syndrome (CBD or CBS), primary progressive aphasias (PPA; both semantic variant (svPPA) and non-fluent variant (nvPPA)), behavioral variant Frontotemporal Dementia (bvFTD), Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD-ALS), and Progressive Supranuclear Palsy (PSP). The longitudinal evaluation of individuals carrying FTD-causing gene mutations (e.g. MAPT, PGRN, C9ORF72) is being used to create disease progression models and validate novel biomarkers to better diagnose and monitor disease.
FTD Center without Walls (FTD-CWOW)
The purpose of this Notice of Funding Opportunity (NOFO) is to support innovative interdisciplinary, multi-institute research that will lead to the identification and validation of the mechanisms underlying neurodegeneration in FTD. It is anticipated this initiative will help develop precision medicine approaches to treating specific FTD subtypes.
ADRD Proteinopathy Consortium
The purpose of this consortium is to structurally characterize protein species associated with Alzheimer's Disease Related Dementias (ADRDs), including the proteins most commonly found in diseased neurons of people with FTD. The structural characterization of FTD-related proteins in their pathogenic forms is anticipated to facilitate the development of PET ligands, which can better diagnose and monitor disease progression.
NIH Estimates of Funding for Various Research, Condition, and Disease Categories
| Research/Disease Areas* | FY 2021 (Actual) | FY 2022 (Actual) | FY 2023 (Actual) | FY 2024 Estimated |
|---|---|---|---|---|
| Frontotemporal Dementia (FTD) | $164 | $169 | $198 | $198 |
*Dollars in millions and rounded
Visit NIH RePORTER to view research across the NIH. To learn more about the NIH Investment on FTD, please visit the Categorical Spending site and enter "Frontotemporal Dementia (FTD)".
Proceedings & Outcomes
FTD and the National Plan to Address Alzheimer’s Disease
On January 4, 2011, the National Alzheimer's Project Act (NAPA) was signed into law. The Act defines "Alzheimer's" as Alzheimer's disease and related dementias (AD/ADRD), which includes frontotemporal degeneration (FTD), Lewy body dementia (LBD), vascular contributions to cognitive impairment/dementia (VCID), and mixed etiology dementias (MED).
ADRD 2022 Summit Overview for FTD
The 2022 Alzheimer’s Disease-Related Dementias (ADRD) Summit was hosted by the National Institute of Neurological Disorders and Stroke (NINDS) in collaboration with the National Institute on Aging (NIA). The 2022 ADRD Summit was mandated by the National Plan to address Alzheimer’s Disease as a follow-up to the 2013 ADRD Summit. The Summit set critical research priorities aimed at advancing our understanding and treatment of Frontotemporal Degeneration (FTD). These priorities focus on several key areas:
- Epidemiology and Genetics: Investigate FTD epidemiology and genetics across diverse populations to understand how socioeconomic and ethnocultural factors influence disease risk and manifestations.
- Biomarkers Development: Develop a comprehensive array of FTD biomarkers for improved diagnosis, prediction, disease monitoring, target engagement, and patient stratification in clinical trials.
- Clinical Trials and Treatments: Accelerate the evaluation of novel FTD treatments by creating new clinical trial resources, designing FTD-specific trials, and conducting innovative prevention and treatment studies.
- Disease Mechanisms: Identify and understand overlapping pathogenic mechanisms between FTD and other neurodegenerative disorders, and elucidate the mechanisms behind cell type vulnerability and the effects on FTD pathogenesis to speed up the development of therapeutic targets.
These priorities aim to propel research forward, ultimately leading to better diagnostic tools, more effective treatments, and a deeper understanding of FTD.
Resources and Tools
Contacts
Frank Shewmaker, Ph.D. | Frontotemporal Dementia Program Director
Tao Sun, Ph.D. | Health Program Specialist
Funding Opportunities
Alzheimer's Disease and Related Dementias Funding Opportunities
News & Events
Alzheimer's Association International Conference
The Registry is an online database to collect information from those affected by all types of Frontotemporal Degeneration. Persons diagnosed, (current/former) caregivers, family, and friends can join.
Alzheimer’s Association FTD Information Page
Rare Diseases Clinical Research Network FTD Page
The Association for Frontotemporal Degeneration (AFTD)
Frontotemporal Dementia (FTD) and other Frontotemporal Disorders