Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021:1281:113-121.
doi: 10.1007/978-3-030-51140-1_8.

The Frontotemporal Dementia Prevention Initiative: Linking Together Genetic Frontotemporal Dementia Cohort Studies

Jonathan D Rohrer  1 , Adam L Boxer  2
Affiliations

The Frontotemporal Dementia Prevention Initiative: Linking Together Genetic Frontotemporal Dementia Cohort Studies

Jonathan D Rohrer et al. Adv Exp Med Biol. 2021.

Abstract

Around one-third of frontotemporal dementia (FTD) is autosomal dominant with the major genetic causes being mutations in MAPT, GRN and C9orf72. Studying familial forms of FTD can provide a window into the earliest stages of the illness, many years before symptoms start. Large cohort studies have been set up in recent years to better understand this presymptomatic phase, including the Genetic FTD Initiative (GENFI) and the Advancing Research and Treatment for Frontotemporal Lobar Degeneration and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (ARTFL/LEFFTDS) studies. Whilst these studies have focused on the investigation of a variety of aspects of genetic FTD, from understanding the molecular pathogenesis to developing biomarkers, they also have a common goal: finding a way to prevent FTD. Researchers from these cohort studies have therefore come together to form the FTD Prevention Initiative (FPI), which has the overarching aim of promoting clinical trials of new therapies to prevent FTD through creating an international database of participants eligible for trials and uniform standards for conducting such trials. This chapter outlines the work of the FPI so far and its future goals over the next few years.

Keywords: C9orf72; Clinical trials; Frontotemporal dementia; Genetics; Progranulin; Tau.

PubMed Disclaimer

References

    1. Bateman RJ, Benzinger TL, Berry S, Clifford DB, Duggan C, Fagan AM et al (2017) DIAN-TU pharma consortium for the dominantly inherited Alzheimer network. The DIAN-TU Next Generation Alzheimer’s prevention trial: Adaptive design and disease progression model. Alzheimers Dement 13(1):8–19
    1. Boxer AL, Gold M, Feldman H, Boeve BF, Dickinson SL, Fillit H et al (2020) New directions in clinical trials for frontotemporal lobar degeneration: methods and outcome measures. Alzheimers Dement 16(1):131–143
    1. Chen Q, Boeve BF, Senjem M, Tosakulwong N, Lesnick T, Brushaber D et al (2020) Trajectory of lobar atrophy in asymptomatic and symptomatic GRN mutation carriers: a longitudinal MRI study Neurobiol Aging 88:42–50
    1. Chen Q, Boeve BF, Senjem M, Tosakulwong N, Lesnick TG, Brushaber D et al (2019) Rates of lobar atrophy in asymptomatic MAPT mutation carriers. Alzheimers Dement (N Y) 5:338–346
    1. Coyle-Gilchrist IT, Dick KM, Patterson K, Vázquez Rodríquez P, Wehmann E, Wilcox A et al (2016) Prevalence, characteristics, and survival of frontotemporal lobar degeneration syndromes. Neurology 86(18):1736–1743

LinkOut - more resources