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Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL)

Recruiting

The goal of this study is to build a clinical research consortium to test new treatments for people with frontotemporal lobar degeneration (FTLD), including frontotemporal dementia (FTD), primary progressive aphasia (PPA), corticobasal degeneration (CBS), and progressive supranuclear palsy (PSP).

Minimum Age Maximum Age Gender Healthy Volunteers
18 Years 85 Years Both No
September 2014
February 2021
1560

  • Meets one of the following research diagnostic criteria for an FTLD syndrome: behavioral variant frontotemporal dementia, primary progressive aphasia, semantic variant primary progressive aphasia, nonfluent variant primary progressive aphasia, frontotemporal dementia with amyotrophic lateral sclerosis, amyotrophic lateral sclerosis alone, corticobasal syndrome, progressive supranuclear palsy, or oligosymptomatic PSP
  • Able to walk (with assistance) at time of enrollment
  • Reliable study partner who can provide an independent evaluation of functioning
  • Speaks English or Spanish
  • Mini Mental State Examination score of 15-30 (inclusive)

  • Known presence of a structural brain lesion (for example, tumor, cortical infarct) that could explain symptoms in a participant without a known FTLD-causing genetic mutation
  • Known presence of an Alzheimer's disease-causing genetic mutation in PSEN1, PSEN2, or APP or neuropathological evidence of Alzheimer's disease
  • Previous history of Korsakoff encephalopathy, severe alcohol dependence (within 5 years of dementia onset), frequent alcohol or other substance intoxication, or other neurological disorder (such as multiple sclerosis)
  • Evidence through history or laboratory testing of B12 deficiency, hypothyroidism, HIV, renal failure, liver failure, respiratory failure requiring oxygen
  • Evidence through history or laboratory testing of extra-axial brain tumor (with visible compression of the brain parenchyma), large cerebral infarct, large confluent white matter lesions
  • Significant systemic medical illnesses, such as deteriorating cardiovascular disease
  • Prohibited medications: any medication likely to affect central nervous system functions, long-acting benzodiazepines such as diazepam (short-acting benzodiazepines are OK), non-SSRI antidepressants (SSRIs or trazodone are OK), lithium, typical neuroleptics, narcotics (codeine is OK, but hold 24 hours before neuropsychological testing), anticonvulsants outside of therapeutic ranges, antihistamines (if taking more than three times per week; hold 24 hours before neuropsychological testing)
  • If relevant, contraindication for MRI scanning, such as pacemaker or other implanted metals

Frontotemporal lobar degeneration (FTLD) is the neuropathological term for a group of rare neurodegenerative diseases that include four main clinical syndromes: frontotemporal dementia (FTD), primary progressive aphasia (PPA), corticobasal degeneration (CBS), and progressive supranuclear palsy (PSP). The goal of this study is to build a clinical research consortium to test new treatments for people with FTLD. The consortium, called Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL), will be headquartered at the University of California, San Francisco, and will partner with six patient advocacy groups.

ARTFL involves two projects: Preparing for Sporadic FTLD Clinical Trials (Project 1) and Longitudinal Assessment of Familial FTLD (Project 2). Self-registration in an online registry will be available for people with any FTLD syndrome. Eligible participants will be invited for a clinical evaluation, consisting of a neurological exam, medical and family history, cognitive testing, and a blood draw.

Participants in Project 1 who have a diagnosis of progressive supranuclear palsy will also undergo a lumbar puncture to collect cerebrospinal fluid and a magnetic resonance imaging (MRI) scan of the brain. Participants in Project 2 will return for a follow-up visit in 12 months to repeat all procedures. Additionally, participants without symptoms will undergo MRI scans at both visits. A genetics core will genotype all individuals for FTLD-associated genes.

Name City State Zip Status Primary Contact
University of Alabama
Birmingham Alabama 35294 Recruiting Emily McKinley, MSPH
205-996-3659
emckinley@uabmc.edu
University of California, Los Angeles
Los Angeles California 90095 Recruiting Elvira Jimenez
310-478-3711
elvira@ucla.edu
University of California, San Diego
San Diego California 92037 Recruiting Veronica Lopez
858-822-5786
vllopez@ucsd.edu
University of California, San Francisco
San Francisco California 94158 Recruiting Reilly Dever, BA
415-476-0670
Reilly.Dever@ucsf.edu
Mayo Clinic - Jacksonville
Jacksonville Florida 32224 Recruiting Dana Haley
904-953-9680
Haley.Dana@mayo.edu
Northwestern University
Chicago Illinois 60611 Recruiting Bita Rad
312-503-1925
bita.rad@northwestern.edu
Johns Hopkins University
Baltimore Maryland 21287 Recruiting Ann Fishman
410-502-5816
ann.fishman@jhu.edu
Harvard University Massachusetts General Hospital
Charlestown Massachusetts 02129 Recruiting Samantha Krivensky
617-726-6205
skrivensky@mgh.harvard.edu
Mayo Clinic - Rochester
Rochester Minnesota 55905 Recruiting Ruth Kraft
507-538-9487
Kraft.Ruth@mayo.edu
Washington University
Saint Louis Missouri 63110 Recruiting Lynne Jones
314-362-8420
jonesly@wustl.edu
Columbia University
New York New York 10032 Recruiting Masood Manoochehehri
212-305-5710
mm2626@cumc.columbia.edu
University of North Carolina
Chapel Hill North Carolina 27599 Recruiting Jessica Ferrall
919-962-8852
jferrall@neurology.unc.edu
Case Western Reserve University Hospitals Cleveland Medical Center
Cleveland Ohio 44106 Recruiting Frances Lissemore, PhD
216-464-6203
Frances.Lissemore@UHhospitals.org
University of Pennsylvania
Philadelphia Pennsylvania 19104-4283 Recruiting Christine Ray, MSW
215-349-5873
rayc@mail.med.upenn.edu
University of Texas Southwestern Medical Center
Dallas Texas 75390 Recruiting Jana Windsor
214-648-8543
Jana.windsor@utsouthwestern.edu
University of Washington Harborview Medical Center
Seattle Washington 98104 Recruiting Christina Caso
206-221-9038
cdcaso@uw.edu
University of British Columbia
Vancouver British Columbia V6T 2B5 Recruiting Pheth Sengdy, BSc, CCRP
604-822-7989
Pheth.Sengdy@vch.ca
University of Toronto
Toronto Ontario M5T 2S8 Recruiting Behnaz Ghazanfari, MD, CCRP
416-603-5800
Behnaz.Ghazanfari@uhnresearch.ca

University of California, San Francisco

  • National Center for Advancing Translational Science (NCATS)
  • National Institute of Neurological Disorders and Stroke (NINDS)
  • The Bluefield Project
  • Tau Consortium

Name Role Affiliation
Adam L. Boxer, MD, PhD Principal Investigator University of California, San Francisco

Name Phone Email
Reilly Dever 415-476-0670 reilly.dever@ucsf.edu

NCT02365922

Rare Diseases Clinical Research Network Advancing Research and Treatment for Frontotemporal Lobar Degeneration [ARTFL]: Research Projects 1 & 2