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Frontotemporal Dementias and Young-Onset Dementias

Remote Blood Biomarker Monitoring in Frontotemporal Lobar Degeneration: Neurofilament Surveillance Project (NSP) 

Principal investigator: Chiadi Onyike, M.D., M.H.S. 
Research Program Administrator: Ann Fishman 

The primary goal of this multi-site is to measure the levels of a protein called neurofilament light chain in the blood of individuals who are members of family with genetic FTD. Neurofilament light chain is a protein that is found in nerve fibers and is released when they are damaged or die. It is thought that the levels of this protein in blood may act as a biomarker, or biological marker, that may be able to give information about the onset or progression of FTD.  

A research nurse will visit the participant’s home, office, or a place of choice approximately every three months for three years. During the visit, a research nurse will draw and prepare a blood sample to use for measurements of neurofilament light chain. This is an ancillary study to the ARTFL-LEFFTDS Longitudinal FTD (ALLFTD) study and one must be a participant in ALLFTD to participate. More information about the study is available at the ALLFTD website. 

Contact: 
410-502-5816 or  ann.fishman@jhu.edu  

Location: 
The Johns Hopkins Hospital 
Division of Geriatric Psychiatry and Neuropsychiatry 
600 N. Wolfe Street, Suite 235 
Baltimore, Maryland 21287 

A Phase 2 Clinical Trial of Intranasal Oxytocin for Frontotemporal Dementia (FOXY) 

Principal Investigator: Chiadi Onyike, M.D., M.H.S.
Research Program Administrator: Ann Fishman 

The primary goal of this study is to determine whether giving Oxytocin to people who have FTD may be helpful in reducing social apathy, indifference, and lack of empathy. These traits are common in people who have FTD and can be burdensome for caregivers, such as family and friends. Patients who have been diagnosed with FTD, display symptoms of moderate social apathy/indifference, and have someone willing to act as a study partner may qualify for this study. 

The study plans to enroll 110 participants at medical centers in Canada and the US. People who join this trial will be given Oxytocin or placebo for about 18 weeks. There will be five clinic visits and two telephone calls that will occur while taking study drug (or placebo). During four of the visits, participants are asked to eat a meal at the clinic while being filmed. More information about the study could be found by visiting the FOXY website. 

Contact: 
410-502-5816 or  ann.fishman@jhu.edu  

Location: 
The Johns Hopkins Hospital 
Division of Geriatric Psychiatry and Neuropsychiatry 
600 N. Wolfe Street, Suite 235 
Baltimore, Maryland 21287 

A Study to Evaluate Efficacy and Safety of AL001 in FTD (INFRONT-3) 

Principal Investigator:  Chiadi Onyike, M.D., M.H.S. 
Research Program Administrator: Ann Fishman 

The primary goal of this phase 3 clinical research study is to examine if increasing progranulin levels after treatment with AL001 will delay the onset of symptoms or slow disease progression when compared to a placebo. Participants need to have a confirmed progranulin gene mutation and either be diagnosed with FTD or at risk of developing FTD symptoms as evidenced by a biomarker.   

The study plans to enroll 180 participants at 80 centers globally. The study drug (AL001 or placebo) will be administered every four weeks by an intravenous (IV) infusion. Assessments will include regular medical examinations, blood tests, brain imaging, and completion of questionnaires. AL001 has not been approved by the FDA or any other health authority approval around the world. More information about the study could be found by visiting the INFRONT-3 website. 

Contact: 410-502-5816 or  ann.fishman@jhu.edu  

Location: 
The Johns Hopkins Hospital 
Division of Geriatric Psychiatry and Neuropsychiatry 
600 N. Wolfe Street, Suite 235 
Baltimore, Maryland 21287 

Measurement of the Clinical Progression and Severity of Frontotemporal Dementia 

Principal Investigator: Chiadi Onyike, M.D., M.H.S. 

Advancements in our understanding of the neurobiology of the FTDs have spurred interest in the development of measures that can track the progression of subtypes of FTD over the entire span of the disease.  This study examines how cognitive, behavioral, and functional deterioration unfolds in FTD, with an eye towards the identification of clinical staging markers and the development of an instrument that can be used in practice and research to track disease progression.  All individuals who have FTD and receive their care from the clinic are eligible for the study. 

Contact: 410-955-5147 or conyike1@jhmi.edu 

Location: 
The Johns Hopkins Hospital 
Division of Geriatric Psychiatry and Neuropsychiatry 
600 N. Wolfe Street, Suite 235 
Baltimore, Maryland 21287 

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