RECRUITING

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Talk to us

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 SclerosisOligosymptomatic PSP (oPSP)C9orf72GRN Related Frontotemporal DementiaMAPT Gene MutationTBK1 Gene MutationOligosymptomatic Progressive Supranuclear Palsy

Quick Navigation

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

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.

Official Title

ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Quick Facts

Study Start:2020-03-01
Study Completion:2025-06
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04363684

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.

Ages Eligible for Study:18 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. * Known presence of a structural brain lesion (e.g. tumor, cortical infarct) that could reasonably explain symptoms in a symptomatic participant.
  2. * 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.
  3. * 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.
  4. * 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.
  5. * Current medication likely to affect CNS functions in the opinion of the site PI.
  6. * 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.

Contacts and Locations

Study Contact

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

Principal Investigator

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 Locations (Sites)

University of Alabama Birmingham
Birmingham, Alabama, 35233
United States
University of California, Los Angeles
Los Angeles, California, 90095
United States
University of California, San Diego
San Diego, California, 92093
United States
University of California San Francisco
San Francisco, California, 91358
United States
University of Colorado Denver
Denver, Colorado, 80204
United States
Mayo Clinic Florida
Jacksonville, Florida, 32224
United States
Emory University
Atlanta, Georgia, 30322
United States
Northwestern University
Chicago, Illinois, 60611
United States
Indiana University
Indianapolis, Indiana, 46202
United States
Johns Hopkins University
Baltimore, Maryland, 21287
United States
NIH
Bethesda, Maryland, 20814
United States
Massachusetts General Hospital
Boston, Massachusetts, 02114
United States
University of Michigan
Ann Arbor, Michigan, 48109
United States
Mayo Clinic Rochester
Rochester, Minnesota, 55905
United States
Washinton University in St. Louis
Saint Louis, Missouri, 63110
United States
Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas, Nevada, 89106
United States
Mount Sinai
New York, New York, 10029
United States
Columbia Unversity
New York, New York, 10032
United States
University of North Carolina, Chapel Hill
Chapel Hill, North Carolina, 27514
United States
Case Western Reserve Medical Center
Cleveland, Ohio, 44106
United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19104
United States
Vanderbilt University
Nashville, Tennessee, 37235
United States
Nantz National Alzheimer Center Houston
Houston, Texas, 77030
United States
UT San Antonio Health Science Center
San Antonio, Texas, 78229
United States
University of Washington
Seattle, Washington, 98195
United States

Collaborators and Investigators

Sponsor: 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

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2020-03-01
Study Completion Date2025-06

Study Record Updates

Study Start Date2020-03-01
Study Completion Date2025-06

Terms related to this study

Additional Relevant MeSH Terms

  • 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