ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Research Consortium

What Is This Study About?

This research effort combines two studies - Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) - into a single North American research consortium to study frontotemporal lobar degeneration (FTLD). The goal of the ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) consortium is to understand the changes in brain function that occur as the disease progresses and how these changes differ from normal aging. Over several years, participants with FTLD and their family members will visit their study site once a year for two to four days. Each annual study visit involves an MRI brain scan, a blood draw, memory and thinking skills questionnaires, an examination by a neurologist, and an optional lumbar puncture. For people who cannot attend annual study visits, they can still participate with a single visit for a brief clinical examination, blood draw, and an optional lumbar puncture.

Do I Qualify To Participate in This Study?

Must have:

Participants must fall into one of the following categories:

• Have at least one family member who has a disease-associated mutation in one of the major genes that cause FTLD: MAPT, GRN, C9orf72 (or other rare genes)
• Have a family history of FTLD or related disorder*, verified by medical record review or well-documented family history
• Have symptoms and a diagnosis of an FTLD syndrome*, with no known family history or genetic mutation

*FTLD syndromes include:

• Progressive supranuclear palsy
• Semantic variant primary progressive aphasia
• Nonfluent variant primary progressive aphasia
• Corticobasal degeneration/corticobasal syndrome
• Behavioral variant frontotemporal dementia
• Frontotemporal dementia with amyotrophic lateral sclerosis

Must NOT have:

• Known presence of a structural brain lesion (for example a tumor) that could explain participant symptoms
• Known presence of an Alzheimer's disease-causing mutation in PSEN1, PSEN2, or APP; or biomarker evidence for Alzheimer's disease
• History of Korsakoff encephalopathy, severe alcohol dependence (within five years of onset of dementia), frequent alcohol or other substance intoxication, or other neurological disorder
• Evidence through history or laboratory testing of uncorrected B12 deficiency, unregulated hypothyroidism, HIV-positive status, renal failure, liver failure, respiratory failure that requires supplemental oxygen, large confluent white matter lesions, and/or significant systemic medical illnesses such as deteriorating cardiovascular disease
• Current medication likely to affect central nervous system functions

If I Qualify, Who Do I Contact?

Contact study personnel listed either under the general study contact or the location nearest you.

 

Who Is the General Study Contact?

For more information about the ALLFTD Study, visit the study website.

Where Is This Study Located?

Alabama
University of Alabama Birmingham Birmingham, AL 35233 Recruiting Loren Brown samanthabrown@uabmc.edu
California
University of California, Los Angeles Los Angeles, CA 90095 Recruiting Kelsey Holiday kholiday@mednet.ucla.edu
University of California, San Diego San Diego, CA 92093 Recruiting Michael Skipworth mskipworth@health.ucsd.edu
University of California San Francisco San Francisco, CA 91358 Recruiting Dilanaz Unal Dilanaz.Unal@ucsf.edu
Colorado
University of Colorado Denver Denver, CO 80204 Recruiting Danelle Carter DANELLE.CARTER@CUANSCHUTZ.EDU
Florida
Mayo Clinic Florida Jacksonville, FL 32224 Recruiting Kandise Chrestensen chrestensen.kandise@mayo.edu
Illinois
Northwestern University Chicago, IL 60611 Recruiting Caila Ryan caila.ryan@northwestern.edu
Indiana
Indiana University Indianapolis, IN 46202 Recruiting Ralitsa Kostadinova rkostad@iu.edu
Maryland
Johns Hopkins University Baltimore, MD 21287 Recruiting Ann Fishman ann.fishman@jhu.edu
NIH Bethesda, MD 20814 Not yet recruiting Carol Hoffman carol.hoffman@nih.gov
Massachusetts
Massachusetts General Hospital Boston, MA 02114 Recruiting Erin Krahn ekrahn@mgh.harvard.edu
Michigan
University of Michigan Ann Arbor, MI 48109 Recruiting Kiren Chaudhry chaudhki@med.umich.edu
Minnesota
Mayo Clinic Rochester Rochester, MN 55905 Recruiting Breanna Bruender bruender.breanna@mayo.edu
Missouri
Washinton University in St. Louis Saint Louis, MO 63110 Recruiting Tina Nolte nolte.tina@wustl.edu
Nevada
Cleveland Clinic Lou Ruvo Center for Brain Health Las Vegas, NV 89106 Recruiting Ghanen Concepcion CONCEPG5@ccf.org
New York
Columbia Unversity New York, NY 10032 Recruiting Arlene Mejia am4717@cumc.columbia.edu
North Carolina
University of North Carolina, Chapel Hill Chapel Hill, NC 27514 Recruiting UNC ALLFTD Team ALLFTD@neurology.unc.edu
Ohio
Case Western Reserve Medical Center Cleveland, OH 44106 Recruiting Maria Toth maria.toth@uhhospitals.org
Pennsylvania
University of Pennsylvania Philadelphia, PA 19104 Recruiting Julia Kwiecinski julia.kwiecinski@pennmedicine.upenn.edu
Tennessee
Vanderbilt University Nashville, TN 37235 Recruiting Jerica Braswell jerica.braswell@vumc.org
Texas
Nantz National Alzheimer Center Houston Houston, TX 77030 Recruiting Victoria Arbones varbones@houstonmethodist.org
UT San Antonio Health Science Center San Antonio, TX 78229 Recruiting Crystal Mendoza mendozac2@uthscsa.edu
Washington
University of Washington Seattle, WA 98195 Recruiting Alicia Adams adamsali@uw.edu

Who Sponsors This Study?

Lead: Mayo Clinic

Collaborator Sponsor

• University of California, San Francisco
• National Institute on Aging (NIA)
• National Institute of Neurological Disorders and Stroke (NINDS)

Source: ClinicalTrials.gov ID: NCT04363684