ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Description

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) represents the formalized integration of ARTFL (U54 NS092089; funded through 2019) and LEFFTDS (U01 AG045390; funded through 2019) as a single North American research consortium to study FTLD for 2019 and beyond.

Conditions

Frontotemporal Lobar Degeneration (FTLD), Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), Behavioral Variant Frontotemporal Dementia (bvFTD), Semantic Variant Primary Progressive Aphasia (svPPA), Nonfluent Variant Primary Progressive Aphasia (nfvPPA), FTD With Amyotrophic Lateral Sclerosis (FTD/ALS), Amyotrophic Lateral Sclerosis, Oligosymptomatic PSP (oPSP), C9orf72, GRN Related Frontotemporal Dementia, MAPT Gene Mutation, TBK1 Gene Mutation, Oligosymptomatic Progressive Supranuclear Palsy

Study Overview

Study Details

Study overview

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) represents the formalized integration of ARTFL (U54 NS092089; funded through 2019) and LEFFTDS (U01 AG045390; funded through 2019) as a single North American research consortium to study FTLD for 2019 and beyond.

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Condition
Frontotemporal Lobar Degeneration (FTLD)
Intervention / Treatment

-

Contacts and Locations

Birmingham

University of Alabama Birmingham, Birmingham, Alabama, United States, 35233

Los Angeles

University of California, Los Angeles, Los Angeles, California, United States, 90095

San Diego

University of California, San Diego, San Diego, California, United States, 92093

San Francisco

University of California San Francisco, San Francisco, California, United States, 91358

Denver

University of Colorado Denver, Denver, Colorado, United States, 80204

Jacksonville

Mayo Clinic Florida, Jacksonville, Florida, United States, 32224

Atlanta

Emory University, Atlanta, Georgia, United States, 30322

Chicago

Northwestern University, Chicago, Illinois, United States, 60611

Indianapolis

Indiana University, Indianapolis, Indiana, United States, 46202

Baltimore

Johns Hopkins University, Baltimore, Maryland, United States, 21287

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Known presence of a structural brain lesion (e.g. tumor, cortical infarct) that could reasonably explain symptoms in a symptomatic participant.
  • * Known presence of an Alzheimer's disease causing mutation in PSEN1, PSEN2 or APP; or biomarker evidence for Alzheimer's disease as a cause of the clinical syndrome.
  • * A previous history of Korsakoff encephalopathy, severe alcohol dependence (within 5 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 (B12 \< 95% of local laboratory's normal value), unregulated hypothyroidism (TSH \>150% of normal), HIV positive, renal failure (creatinine \> 2), liver failure (ALT or AST \> two times normal), respiratory failure that requires supplemental oxygen, large confluent white matter lesions, significant systemic medical illnesses such as deteriorating cardiovascular disease.
  • * Current medication likely to affect CNS functions in the opinion of the site PI.
  • * In the site investigator's opinion, the participant cannot complete sufficient key study procedures. The participant may be enrolled into the biofluid-focused arm if they can tolerate a blood draw and short clinical exam, but must be able to complete at least 75% of study procedures for enrollment into the longitudinal arm.

Ages Eligible for Study

18 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Mayo Clinic,

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

Study Record Dates

2025-06