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                        Alzheimer's Disease and Related Dementias
SHARE: Focus On Frontotemporal Dementia (FTD)
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              3D illustration. Concept of artificial neuron. Focus on Frontotemporal Dementia (FTD) banner
Frontotemporal dementia (FTD), also referred to as Frontotemporal lobar degeneration (FTLD), is a clinically and pathologically heterogeneous group of non-Alzheimer dementias characterized collectively by progressive atrophy involving the frontal or temporal lobes, or both. In the past three decades the complexity of these diseases and their unique status as examples of selective brain degeneration has been fully appreciated. Although onset is typically in the sixth decade of life, it may begin as early as the third or as late as the ninth decade, and the prevalence of FTD in older age groups has almost certainly been underestimated.

The NINDS is interested in Clinical Trial readiness applications for Frontotemporal Degeneration (FTD).  To learn more please read NOT-NS-18-082.

The NINDS supports a number of projects covering all aspects of FTD research.  Some of our bigger initiatives are list here:

Advancing Research & Treatment for Frontotemporal Lobar Degeneration (ARTFL)

The Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL) consortium is a group of academic medical centers in the USA and Canada seeking volunteers to participate in a longitudinal study that will collect clinical and genetic data to learn more about the progression of FTD. The ARTFL project will establish a large cohort of patients with FTLD syndromes including Corticobasal Degeneration Syndrome (CBD or CBS), primary progressive aphasias (PPA) including 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). Healthy family members of patients with genetic causes of FTLD are also enrolled.

Tau Center without Walls

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 molecular mechanisms relevant to human biology that contribute to tau toxicity associated with Frontotemporal Degeneration (FTD). It is anticipated that this research will also contribute to tool development that can be applied to target validation in FTD clinical trials. The Tau CWOWs aim to identifying genes and pathways that modulate tau toxicity in FTD and link tau proteostasis with neuronal activity in frontotemporal dementia.

FTD Sequencing Consortium

The purpose of this consortium, developed in resoponce to this NOFO, is to support the genetic discovery, replication and validation of disease causing mutations, risk variants and genetic modifiers which contribute to the pathophysiology, proteinopathies and clinical heterogeneity representative of the neurological syndromes that are classified under the broad spectrum of Frontotemporal Degeneration (FTD). The FTD Sequencing Consortium NOFO supports whole genome sequencing, replication and functional variant validation studies of FTD case/control and family-based cohorts identified through clinical diagnosis or autopsy confirmation.

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

NIH Estimates of Funding for Various Research, Condition, and Disease Categories

Research/Disease Areas*
			FY 2019
			(Actual)
			FY 2020
			(Actual)
			FY 2021
			(Actual)
			FY 2022
			EstimatedFrontotemporal Dementia (FTD)
			$158
			$166
			$169
			$176

*Dollars in millions and rounded

*To learn more about this NIH Investment, please visit the Categorical Spending site and enter "Frontotemporal Dementia (FTD)".*

Related Federal Programs

Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS)

The Longitudinal Evaluation of Familial Frontotemporal Dementia (LEFFTDS) is a network of academic medical centers in the USA and Canada seeking volunteers for a longitudinal study of individuals diagnosed with FTD caused by one of the gene mutations - MAPT, PGRN, C9ORF72, or TARDBP – along with their family members who also have the mutation but may not have symptoms. The aim of the project is to better understand how gene mutations affect development of FTD and use this to support drug development.

**Visit Federal RePORTER to view FTD research accross the Federal Government**

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 2016 Summit Overview for FTD

The 2016 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 2016 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 research priorities for FTD research, including:

Basic Science: Pathogenesis and Toxicity

Clarify the mechanism of tau pathogenesis and associated neurodegeneration
	Determine the molecular basis for C9ORF72 expansion and GNR mutation-related neurodegeneration
	Determine the mechanisms of RNA Processing pathogenesis and toxicity
	Develop better FTLD *in vivo* and cell-based model systemsClinical Science

Expand efforts to genotype patients with FTD and identify new genes and their functional relationship to FTLD pathogenesis
	Develop FTD biomarkers for diagnosis and disease progression
	Create an international FTD clinical trial network
	Understand phenotypic heterogeneity and natural history



Resources and Tools

Contacts

Amelie Gubitz, Ph.D. | Program Director, Neurodegenerationag406h@nih.gov

Funding Opportunities

Alzheimer's Disease and Related Dementias Funding Opportunities

News & Events

New and Upcoming Opportunities for Alzheimer’s Disease-Related Dementias (ADRD) Research in Fiscal Year 2019

A new culprit tangles with ApoE4 in Alzheimer’s disease

Designer compound may untangle damage leading to some dementias

ADRD Summit 2022

Alzheimer's Association International Conference

NAPA Council



Related Topics

FTD Disorders Registry

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

FTD Information Page Current Research
  
    

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