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The FTD Disorders Registry plans to help support clinical trials in all of the forms of frontotemporal degeneration, including:

Behavioral variant Frontotemporal Degeneration (Dementia) (bvFTD)

Semantic variant primary progressive aphasia (svPPA)

Nonfluent/agrammatic variant PPA (naPPA)

Logopenic variant PPA (lvPPA)

Progressive supranuclear palsy (PSP)

Corticobasal degeneration (CBD)

Frontotemporal Degeneration with Amyotrophic Lateral Sclerosis (FTD-ALS)

Current Studies

Our first study partners are two clinical research networks for FTD funded by the National Institutes of Health in October, 2014.  The studies are commonly known as ARTFL and LEFFTDS.

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. If you have signed up to participate in research here on the Registry website, you may be asked to participate in online research surveys for the ARTFL project. You can find out more about ARTFL here.

 

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, or C9ORF72 – 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. You can find out more about LEFFTDS here.

 

Low-Dose Lithium for Treatment of Behavioral Symptoms in FTD

The study is a randomized, placebo controlled clinical trial being run by Dr. Edward Huey at Columbia University Medical Center. It aims to test low-dose lithium carbonate as a treatment for behavioral symptoms of FTD. Participants need to have a diagnosis of FTD, PPA, or Semantic Dementia and need to be accompanied by a care partner who can provide information about the patient during interviews. The study lasts for 12 weeks, with clinic visits every two weeks. For more information, see the ClinicalTrials.gov listing.


Human CNS Tau Kinetics in Tauopathies (TANGLES

The TANGLES study is being conducted at Washington University in St. Louis’ School of Medicine. The goal of this study is to learn more about the metabolism (production and clearance) of tau in humans. Tau is a peptide which can develop tangles in neurons. Tau affects individuals with neurodegenerative disorders that have tauopathies. This study will allow us to better understand the role that the protein tau has in neurodegenerative disorders. Persons diagnosed with PSP, CBD, or FTD due to MAPT mutations are eligible. Biological family members of MAPT carriers also eligible. You can find out more about TANGLES here.

 

Genes, Brains, and Decisions

This online study is being conducted by the University of California San Francisco Memory and Aging Center to learn more about changes in decision-making in family members of patients with genetic forms of FTD. We will compare decision-making in family members who have these genes to family members who don’t have these genes. You are eligible to take part in this study if you are a family member of a patient with a genetic form of FTD that is enrolled either in the ARTFL or the LEFFTDS research studies, and you yourself do not have a diagnosis of dementia. You can find more information here

 

Language in Primary Progressive Aphasia

The observational primary progressive aphasia (PPA) research program at Northwestern University seeks to study individuals living with PPA over time using neuropsychological testing and advanced imaging techniques. Participants are asked to come to Chicago in order to help: 1) understand progression in PPA and its link to brain changes, 2) increase awareness of PPA and better educate patients, families, and clinicians, and 3) identify biomarkers that will lead to earlier diagnosis and earlier intervention. Participants are compensated for participation and travel expenses and meals are covered for those not local to Chicago. For more information, please see the clinical trials.gov listing or contact the study team.
 

COMMUNICATION BRIDGE: SPEECH THERAPY FOR PPA

The Communication Bridge study at Northwestern University, is an internet-based, speech therapy intervention for individuals with mild Primary Progressive Aphasia and their Communication Partner (spouse, relative, or close friend). The goal of the study is to understand how speech-language therapy affects communication abilities in people living with PPA. All study visits take place over the Internet in your home. The study lasts about one year and involves using a computer video-chat program; the computer will be provided for the length of the study. You will complete online evaluations and speech therapy sessions with a licensed speech-language pathologist, as well as home exercises on a personalized web-application designed for the study. You can find more information [here].

 

Treatment of Disturbed Sleep in PSP 

This is a remote clinical trial being run by Dr. Thomas Neylan at the University of California San Francisco Memory and Aging Center. The goal is to test the effect of two sleep-medications on the treatment of sleep disruption in Progressive Supranuclear Palsy (PSP) without the need of in-person visits to a study site. The study uses a crossover design so that each participant will be assigned to sequentially receive two specific FDA approved sleeping medications and placebo throughout the 6-week course of the study. Participants need to have a diagnosis of PSP and an available care partner to help provide information during the interviews. All standard study assessments will be done over the phone, with at least 1 phone call every week. You can find more information about the Sleep Study here

 

Development in Families with FTD

The University of California, San Francisco Dyslexia Center is conducting a new study to better understand the development of childhood cognitive abilities in families with frontotemporal dementia. We are recruiting children, ages 7 to 17, from families with a known gene mutation for frontotemporal dementia. The aim of the study is to learn more about the diverse brain, behavioral, and cognitive differences throughout the lifespan, and to assess neurodevelopmental trajectories in children whose families have a history of neurodegenerative disease. Participation in this study involves research visits to our center for a comprehensive battery of tests to measure cognitive ability, a clinical evaluation by a neurologist, a brain scan, and other tests. You can find more information here.

 

Tissue Donation

Understanding of FTD has increased dramatically thanks to families who have been willing to donate tissue or research when a loved one passes away. This is a complex and difficult decision for any family to make. If you are interested in learning about tissue donation, there is help from AFTD here and from CurePSP here.

 

More Places To Find Studies

The Association for Frontotemporal Degeneration posts a table with studies currently recruiting volunteers for the FTD disorders, AFTD-clinical trials listing.

CurePSP posts listings of studies for families affected by PSP and CBS/CBD here.

Michael J. Fox Foundation For Parkinson’s Research lists studies and can help match patients with CBD and PSP to trials using the FoxTrialFinder here.