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:
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||215-662-3596|
|104||Roberson, Erik||University of Alabama at Birmingham||Birmingham, AL||35233||Emily McKinley||205-996-3659|
|105||Domoto-Reilly, Kimiko||University of Washington School of Medicine||Seattle, WA||98195-6424||Christina Caso||206-221-9038|
|106||Mendez, Mario||UCLA||Los Angeles, CA||90095||Diana Chavez||310-478-3711, Ext: 48176|
|107||Galvin, James||Florida Atlantic University||Boca Raton, FL||33431||Marcia Walker||561-297-4984|
|108||Hales, Chadwick||Emory University School of Medicine||Atlanta, GA||30322||Attis, Tamara||404-712-6914|
|113||Crane, Monica||Genesis Neuroscience Clinic||Knoxville, TN||37909||Jackson, Jerica||865-888-9494|
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: firstname.lastname@example.org 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.