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

Recruiting

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. The goal of the consortium, named ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD), is to understand the changes in brain function that occur as the disease progresses and how these changes differ from normal aging.

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years N/A All Yes
March 1, 2020
July 2024
2100

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 (PSP)
  • Semantic variant primary progressive aphasia (svPPA)
  • Nonfluent variant primary progressive aphasia (nfvPPA)
  • Corticobasal degeneration (CBD)/corticobasal syndrome (CBS)
  • Behavioral variant frontotemporal dementia (bvFTD)
  • Frontotemporal dementia with amyotrophic lateral sclerosis (FTD/ALS)

  • 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

The focus of the ALLFTD study is to evaluate people with FTLD and their family members to track changes in symptoms, brain function, and biomarkers, such as protein levels in blood and cerebrospinal fluid and results on brain imaging scans, over several years.

In the longitudinal arm of the study, participants will visit their study site two to four days once a year for the duration of the study. Each annual study visit involves an MRI study of the participants brain, a blood draw, memory and thinking skills questionnaires, an examination by a neurologist, and an optional lumbar puncture. 

For people who cannot participate in the longitudinal study, they can still participate in biofluid collection during a single visit if they are able to complete a blood draw and short clinical examination.

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

Name City State Zip Status Primary Contact
University of Alabama Birmingham
Birmingham Alabama 35233 Recruiting Samantha Brown

samanthabrown@uabmc.edu
University of California, Los Angeles
Los Angeles California 90095 Recruiting Diana Chavez

diana.chavez@mednet.ucla.edu
University of California, San Diego
San Diego California 92093 Recruiting Aishwarya Niraula

a2niraula@ucsd.edu
University of California San Francisco
San Francisco California 91358 Recruiting Lynn Bajorek

lynn.bajorek@ucsf.edu
Mayo Clinic Florida
Jacksonville Florida 32224 Recruiting Heather Cissel

cissel.heather@mayo.edu
Northwestern University
Chicago Illinois 60611 Recruiting Emma Pollner

emma.pollner@northwestern.edu
Johns Hopkins University
Baltimore Maryland 21287 Recruiting Ann Fishman

ann.fishman@jhu.edu
Massachusetts General Hospital
Boston Massachusetts 02114 Recruiting Erin Krahn

ekrahn@mgh.harvard.edu
Mayo Clinic Rochester
Rochester Minnesota 55905 Recruiting Kevin Nelson
507-284-9295
nelson.kevin1@mayo.edu
Washinton University in St. Louis
Saint Louis Missouri 63110 Recruiting Tina Nolte

nolte.tina@wustl.edu
Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas Nevada 89106 Recruiting Faye Luong

luongf@ccf.org
Columbia Unversity
New York New York 10032 Recruiting Masood Manoochehri

mm2626@cumc.columbia.edu
University of North Carolina, Chapel Hill
Chapel Hill North Carolina 27514 Recruiting Karen Nicely

karen_nicely@med.unc.edu
Case Western Reserve Medical Center
Cleveland Ohio 44106 Recruiting Fran Lissemore
216-464-6203
frances.lissemore@uhhospitals.org
University of Pennsylvania
Philadelphia Pennsylvania 19104 Recruiting Erica Howard

erica.howard@uphs.upenn.edu
Nantz National Alzheimer Center Houston
Houston Texas 77030 Recruiting Victoria Arbones

varbones@houstonmethodist.org
University of Washington
Seattle Washington 98195 Recruiting Christina Caso

cdcaso@uw.edu
University of British Columbia
Vancouver British Columbia Recruiting Jessica Luk

jessica.luk@vch.ca
University of Toronto
Toronto Ontario Recruiting Cristina Salvo
416-507-6880
cristina.salvo@uhn.ca

Mayo Clinic

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

Name Role Affiliation
Bradley Boeve, MD Principal Investigator Mayo Clinic
Adam Boxer, MD, PhD Principal Investigator University of California, San Francisco
Howie Rosen, MD Principal Investigator University of California, San Francisco

Name Phone Email
Leah K Forsberg, PhD 507-293-9577 forsberg.leah@mayo.edu
Hilary Heuer, PhD 415-476-6743 hilary.heuer@ucsf.edu

NCT04363684

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)