Featured Studies

Participating in research can bring new ways to help families today, and build hope for a future without this disease. You may choose to find out more about the following featured studies:

FORWARD Study

There is much to learn about Frontotemporal Dementia, especially when it comes to finding the best way to measure its symptoms and impact on individuals’ everyday lives.

If you have Frontotemporal Dementia, you may want to consider the FORWARD study.

What is the purpose of the FORWARD study?

This is an observational study designed to learn more about FTD and to find answers to important questions, such as “how do symptoms change over time?” Eligible participants will work with study staff over the course of a year to answer questions about their daily functioning, as well as participate in cognitive assessments.

Who can participate?

You may be eligible to participate in the FORWARD study if you:

  • Are 18 to 80 years old
  • Have been diagnosed with Behavioral Variant Frontotemporal Dementia (bvFTD)
  • Other criteria may apply

To find out if you may be eligible to participate, please contact one of the currently recruiting investigative sites near you listed below. Additional information can be found on clinicaltrials.gov by navigating to this page: clinicaltrials.gov/ct2/show/NCT03088956

Site # PI Name Site City Postal Code Site Contact Site Contact Email Site Contact Phone #
103 Grossman, Murray Penn Memory Center Philadelphia, PA 19104 Courtney Igne Email 215-662-3596
104 Roberson, Erik University of Alabama at Birmingham Birmingham, AL 35233 Emily McKinley Email 205-996-3659
105 Domoto-Reilly, Kimiko University of Washington School of Medicine Seattle, WA 98195-6424 Christina Caso Email 206-221-9038
106 Mendez, Mario UCLA Los Angeles, CA 90095 Diana Chavez Email 310-478-3711, Ext: 48176
107 Galvin, James Florida Atlantic University Boca Raton, FL 33431 Marcia Walker Email 561-297-4984
108 Hales, Chadwick Emory University School of Medicine Atlanta, GA 30322 Attis, Tamara Email 404-712-6914

 

Other recent studies of note

Low-Dose Lithium for the Treatment of Behavioral Symptoms of FTD

A study sponsored by Columbia University in collaboration with the Alzheimer’s Drug Discovery Foundation is seeking persons diagnosed with behavioral variant FTD, semantic variant primary progressive aphasia (PPA), or agrammatic, non-fluent PPA with behavioral symptoms, for a study to test the use of a drug to treat behavioral symptoms in FTD. The study, which will run over approximately 12 weeks, is recruiting volunteer participants at the Irving Institute at Columbia University Medical Center. A care partner (family member) will be required to provide information about the patient during interviews. The study will cover transportation costs as well as an additional stipend per participant. For more information, contact Hannah Silverman at: hs2971@cumc.columbia.edu or by calling 212-305-6284.

Clinical trials and studies aren’t the only way to participate in research! You may also wish to consider:

  • The FTD Disorders Registry features ways to participate in research, to spur innovation that will lead to effective treatments and therapies.
  • ARTFL Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL) is a natural-history study of FTD, open to anyone with an FTD disorder. ARTFL is funded by the NIH and is part of the Rare Diseases Clinical Research Network.
  • LEFFTDS – The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) conducts longitudinal studies of individuals who have mutations in the three genes most commonly affected in FTD:  MAPT, GRN, or C9orf72. A primary goal of LEFFTDS is to identify the most robust and reliable methods to track disease progression in familial FTD so that disease-modifying therapeutic trials can be designed appropriately.

PLEASE NOTE: AFTD is under no obligation to publicize any study, and may turn down such a request at any time. AFTD at no time “endorses” or “approves” any study, whether or not it chooses to publicize it.