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Frontotemporal Dementia: Research Studies

Caregiver Opportunities for Optimizing Lifestyles: A Research Opportunity for African American Caregivers (COOL-AD)

Ken Hepburn, PhD
Emory University School of Nursing

Monica Parker, M.D.
Emory University School of Medicine

Link to study flyer »

This is a research study of methods to improve the health and well being of African American Caregivers of persons with Alzheimer’s disease. Join us to benefit African American Caregivers of family members with Alzheimer’s Disease. Learn strategies for caregiving to help decrease stress. Increase your knowledge and awareness of self care in your caregiving. Become a part of improving the lives of caregivers in the African American community by enrolling in this research study

For additional information about this research study call the study coordinator at 404-727-8481.


Development of a Biomarker for FTLD-TDP and FTLD-Tau

William Hu, MD, PhD
Assistant Professor, Emory University Department of Neurology

 Currently, there is no reliable way of differentiating between people with FLTD-TDP and FTLD-Tau.  These two types of neuropathology can cause the same symptoms, and extensive work on clinical symptoms and MRI patterns have not succeeded in generating a “biomarker” that can predict the underlying FTLD subtype.  We have developed a test that can potentially separate the two groups of patients.  This test measures the levels of 6 proteins in the spinal fluid, and requires you to undergo a lumbar puncture (also known as a spinal tap).  With funding from the Association for Frontotemporal Dementia and Alzheimer’s Drug Discovery Foundation,  Emory is leading a multi-center study to confirm the usefulness of these markers to identify FTLD-TDP and FTLD-Tau, with collaborators at University of Pennsylvania (Philadelphia, Pennsylvania) and the Mayo Clinic (Rochester, Minnesota).  We are recruiting the following patients for this study:

  • FTD patients with ALS
  • FTD patients with gait problems suggestive of PSP
  • FTD patients with other family members with FTD, ALS, or a tauopathy
  • FTD patients interested in future brain donation for autopsy studies

Subjects for this study are recruited from the Emory Neurology Clinics.


Cognitive Decline in Patients with Amyotrophic Lateral Sclerosis (ALS)

William Hu, MD, PhD
Assistant Professor, Emory University Department of Neurology

Jonathan Glass, MD
Professor, Emory University Department of Neurology

Jaffar Khan, MD
Assistant Professor, Emory University Department of Neurology

Some patients with ALS have brain changes very similar to FTD patients with FTLD-TDP, and they go on to develop dementia symptoms very similar to FTD.  In collaboration with the Emory ALS Clinic, we have developed a way to identify those patients with cognitive impairment.  We are conducting a study to collect blood and spinal fluid from ALS patients without dementia and ALS patients with dementia, to develop a test that can predict whether someone with ALS will develop dementia in the future. 

Patients are recruited through the Emory ALS Clinic and the Emory ADRC.


Natural History of FTD Subtypes

William Hu, MD, PhD
Assistant Professor, Emory University Department of Neurology

FTD patients are often given a syndromic diagnosis that reflects the most prominent symptoms, but additional symptoms can emerge during the disease course.  For example, some patients with prominent behavioral changes develop language symptoms sufficiently severe to impair one’s ability to communicate, and some patients develop symptoms of ALS that interfere with one’s ability to walk.  We are conducting a longitudinal study to determine which patients will have faster progression than others, and which patients will develop additional symptoms.

For additional information on this research study call 404-728-6950.


Emory Alzheimer's Disease Research Center Honor Research Registry

James Lah, MD, PhD
Clinical Core Leader, Emory Alzheimer's Disease Research Center

Felicia Goldstein, PhD
Clinical Core Co-Leader, Emory Alzheimer's Disease Research Center

Link to study flyer »

The purpose of Honor is to have a group of volunteers who want to participate in future research studies on memory & thinking.    By joining Honor you will learn about new research studies that are seeking volunteers.  You will also receive our newsletter and invitations to educational events. 

All Honor volunteers must have a “study partner” accompany them to their research visit.  Your study partner will be asked questions about your memory and thinking.  They will also be asked about your day to day functioning.  A study partner is someone who has at least 10 hours of contact with you each week.

For more information about this research study, please call Letheshia Husbands at 404-728-6950 or email lhusban@emory.edu .