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

Start: March 1, 2020
End: July 2024
Enrollment: 2100

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?

Minimum Age: 18 Years

Maximum Age: N/A

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.

Study Contact
Leah K Forsberg, PhD
Hilary Heuer, PhD

Need Help?

Contact NIA’s Alzheimer’s and related Dementias Education and Referral (ADEAR) Center at 800-438-4380 or email ADEAR.

Where Is This Study Located?

University of Alabama Birmingham
Birmingham, AL 35233
Samantha Brown
University of California, Los Angeles
Los Angeles, CA 90095
Jessica Morales
University of California, San Diego
San Diego, CA 92093
Aishwarya Niraula
University of California San Francisco
San Francisco, CA 91358
Lynn Bajorek
University of Colorado Denver
Denver, CO 80204
Not yet recruiting
Francesca Dino
Mayo Clinic Florida
Jacksonville, FL 32224
Ana Reineke
Northwestern University
Chicago, IL 60611
Emma Pollner
Indiana University
Indianapolis, IN 46202
Not yet recruiting
Johns Hopkins University
Baltimore, MD 21287
Ann Fishman
Massachusetts General Hospital
Boston, MA 02114
Erin Krahn
University of Michigan
Ann Arbor, MI 48109
Not yet recruiting
Mayo Clinic Rochester
Rochester, MN 55905
Kevin Nelson
Washinton University in St. Louis
Saint Louis, MO 63110
Tina Nolte
Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas, NV 89106
Faye Luong
New York
Columbia Unversity
New York, NY 10032
Masood Manoochehri
North Carolina
University of North Carolina, Chapel Hill
Chapel Hill, NC 27514
Brittni Teresi
Case Western Reserve Medical Center
Cleveland, OH 44106
Fran Lissemore
University of Pennsylvania
Philadelphia, PA 19104
Yvonne Balgenorth
Vanderbilt University
Nashville, TN 37235
Not yet recruiting
Jerica Braswell
Nantz National Alzheimer Center Houston
Houston, TX 77030
Victoria Arbones
University of Washington
Seattle, WA 98195
Alicia Adams

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: ID: NCT04363684