ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)

Full Study Summary:

The ARTFL LEFFTDS Longitudinal Frontotemporal Dementia (ALLFTD) study aims to evaluate sporadic (s-) and familial (f-) frontotemporal lobar degeneration (FTLD) patients and asymptomatic family members of f-FTLD patients, characterizing the cohorts longitudinally and informing clinical trial design. The study has two arms: a "longitudinal arm" involving a comprehensive assessment of clinical, functional, imaging, and biofluid data collection annually, and a "biofluid-focused arm" involving limited clinical data to accompany biospecimen collection. For more information: https://www.allftd.org/

• Eligibility Criteria

  Gender:

  Female, Male

  Minimum Age:

  18

  Maximum Age:

  N/A

  Time since Symptom Onset:

  Time since Diagnosis:

  Can participants use Riluzole?

  Yes

  
  

  Study Population
  Participants will have a referring diagnosis of an FTLD clinical syndrome or will be a member of a family with a strong family history of an FTLD syndrome.

  Criteria
  Longitudinal Arm Inclusion Criteria
  Familial FTLD (f-FTLD) participants (either is acceptable):

  • members of families in whom at least one member has a known disease-associated mutation in one of the major genes that cause f-FTLD: MAPT, GRN, C9orf72 (or other rare genes)
  • an autosomal dominant family history of a FTLD syndrome (without a known gene) verified by medical record review or well-documented family history including family members with a medical history consistent with FTLD or a related disorder.

  Sporadic FTLD (s-FTLD) participants:

  Sporadic participants should be symptomatic with no known family history nor a genetic mutation indicating f-FTLD. All sporadic participants must have an FTLD syndrome as a referring diagnosis; those determined by ALLFTD clinicians to have non-FTLD diagnoses will be excluded from longitudinal visits, but their baseline visit will be included in comparative datasets. For inclusion in the longitudinal follow-up, participants should meet research criteria for one of the following FTLD syndromes:

  • 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)

  Biofluid-Focused Arm Inclusion Criteria

  Participants enrolled in the biofluid arm may be either f-FTLD or s-FTLD. All general inclusion criteria apply. Participants should meet research criteria (as specified above) for any FTLD syndrome or meet familial FTLD inclusion criteria. Because the biofluid arm participants do not undergo the same detailed clinical and functional assessments required for the longitudinal arm, participants may be included regardless of primary language, as long as an appropriately translated consent is available.

  Exclusion 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.

• Site Contact Information

  University of Alabama Birmingham
  Samantha Brown / .(JavaScript must be enabled to view this email address) / Birmingham, Alabama 35233
  United States

  University of California, Los Angeles
  Diana Chavez / .(JavaScript must be enabled to view this email address) / Los Angeles, California 90095
  United States

  University of California, San Diego
  Aishwarya Niraula / .(JavaScript must be enabled to view this email address) / San Diego, California 92093
  United States

  University of California San Francisco
  Lynn Bajorek / .(JavaScript must be enabled to view this email address) / Elise Ong / .(JavaScript must be enabled to view this email address) / San Francisco, California 91358
  United States

  Mayo Clinic Florida
  Ann Worthen / .(JavaScript must be enabled to view this email address) / Jacksonville, Florida 32224
  United States

  Northwestern University
  Emma Pollner / .(JavaScript must be enabled to view this email address) / Chicago, Illinois 60611
  United States

  Johns Hopkins University
  Ann Fishman / .(JavaScript must be enabled to view this email address) / Baltimore, Maryland 21287
  United States

  Massachusetts General Hospital
  Erin Krahn / .(JavaScript must be enabled to view this email address) / Boston, Massachusetts 02114
  United States

  Mayo Clinic Rochester
  Kevin Nelson / .(JavaScript must be enabled to view this email address) / 507-284-9295
  Rochester, Minnesota 55905
  United States

  Washinton University in St. Louis
  Tina Nolte / .(JavaScript must be enabled to view this email address) / Saint Louis, Missouri 63110
  United States

  Cleveland Clinic Lou Ruvo Center for Brain Health
  Las Vegas, Nevada 89106
  United States

  Columbia Unversity
  Masood Manoochehri / .(JavaScript must be enabled to view this email address) / New York, New York 10032
  United States

  University of North Carolina, Chapel Hill
  Karen Nicely / .(JavaScript must be enabled to view this email address) / Jessica Ferrall / .(JavaScript must be enabled to view this email address) / Chapel Hill, North Carolina 27514
  United States

  Case Western Reserve Medical Center
  Fran Lissemore / .(JavaScript must be enabled to view this email address) / 216-464-6203
  Cleveland, Ohio 44106
  United States

  University of Pennsylvania
  Jessica Bove / .(JavaScript must be enabled to view this email address) / Philadelphia, Pennsylvania 19104
  United States

  Nantz National Alzheimer Center Houston
  Victoria Arbones / .(JavaScript must be enabled to view this email address) / Houston, Texas 77030
  United States

  University of Washington
  CHristina Caso / .(JavaScript must be enabled to view this email address) / Seattle, Washington 98195
  United States

  University of British Columbia
  Yasmin Banga / .(JavaScript must be enabled to view this email address) / 604-822-5009
  Rachel Freid / .(JavaScript must be enabled to view this email address) / 604-827-1050
  Vancouver, British Columbia
  Canada

  University of Toronto
  Cristina Salvo / .(JavaScript must be enabled to view this email address) / 416-507-6880
  Behnaz Ghazanfari / .(JavaScript must be enabled to view this email address) / Toronto, Ontario
  Canada