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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.

Need Help?

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

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, 35233
Recruiting
Samantha Brown
samanthabrown@uabmc.edu
California
University of California, Los Angeles
Los Angeles, 90095
Recruiting
Diana Chavez
diana.chavez@mednet.ucla.edu
University of California, San Diego
San Diego, 92093
Recruiting
Aishwarya Niraula
a2niraula@ucsd.edu
University of California San Francisco
San Francisco, 91358
Recruiting
Lynn Bajorek
lynn.bajorek@ucsf.edu
Florida
Mayo Clinic Florida
Jacksonville, 32224
Recruiting
Heather Cissel
cissel.heather@mayo.edu
Illinois
Northwestern University
Chicago, 60611
Recruiting
Emma Pollner
emma.pollner@northwestern.edu
Maryland
Johns Hopkins University
Baltimore, 21287
Recruiting
Ann Fishman
ann.fishman@jhu.edu
Massachusetts
Massachusetts General Hospital
Boston, 02114
Recruiting
Erin Krahn
ekrahn@mgh.harvard.edu
Minnesota
Mayo Clinic Rochester
Rochester, 55905
Recruiting
Kevin Nelson
nelson.kevin1@mayo.edu
Missouri
Washinton University in St. Louis
Saint Louis, 63110
Recruiting
Tina Nolte
nolte.tina@wustl.edu
Nevada
Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas, 89106
Recruiting
Faye Luong
luongf@ccf.org
New York
Columbia Unversity
New York, 10032
Recruiting
Masood Manoochehri
mm2626@cumc.columbia.edu
North Carolina
University of North Carolina, Chapel Hill
Chapel Hill, 27514
Recruiting
Karen Nicely
karen_nicely@med.unc.edu
Ohio
Case Western Reserve Medical Center
Cleveland, 44106
Recruiting
Fran Lissemore
frances.lissemore@uhhospitals.org
Pennsylvania
University of Pennsylvania
Philadelphia, 19104
Recruiting
Erica Howard
erica.howard@uphs.upenn.edu
Texas
Nantz National Alzheimer Center Houston
Houston, 77030
Recruiting
Victoria Arbones
varbones@houstonmethodist.org
Washington
University of Washington
Seattle, 98195
Recruiting
Christina Caso
cdcaso@uw.edu

Who Sponsors This Study?

Lead: Mayo Clinic

Source: ClinicalTrials.gov ID: NCT04363684