Evidence map›Paper›PMID 31668596›Full record

ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2020

New directions in clinical trials for frontotemporal lobar degeneration: Methods and outcome measures.

Adam L Boxer, Michael Gold, Howard Feldman, Bradley F Boeve, Susan L-J Dickinson, Howard Fillit, Carole Ho, Robert Paul, Rodney Pearlman, Margaret Sutherland and 21 more

Registry-linked trialOpen access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT02372773 (Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects), which is not on this map. Cited by 46 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
46citing papers in PubMed, 1 pooled it
5.8field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT02372773 completednot on this map

Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects

TypeobservationalSponsorMayo ClinicRan2015 to 2020Enrolled398ConditionsFamilial Frontotemporal Dementia
3 · Its place in the literature

Who cites it

46 citing papers in PubMed, 1 synthesis or guideline pooled it, 63 citations in OpenAlex.

  1. Pooled it
  2. Trial
  3. Trial
  4. Review
  5. Article
  6. Observational
  7. Article
  8. Article
  9. Article
  10. Review
  11. Review
  12. Twenty years of therapeutic development in tauopathy mouse models: a scoping review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
  13. Article
  14. Review
  15. A framework for translating tauopathy therapeutics: Drug discovery to clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Review
  16. Article
  17. Article
  18. Identifying and Diagnosing TDP-43 Neurodegenerative Diseases in Psychiatry.The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry · 2024
    Review
  19. Observational
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

31 authors at 20 institutions in 3 countries.

Adam L BoxerMemory and Aging Center, Department of Neurology, University of California San Francisco, San Francisco, CA, USA.
Michael GoldDevelopment Neurosciences, AbbVie, Chicago, IL, USA.
Howard FeldmanDepartment of Neurosciences, University of California San Diego, San Diego, CA, USA.
Bradley F BoeveDepartment of Neurology, Mayo Clinic, Rochester, MN, USA.
Susan L-J DickinsonAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Howard FillitAlzheimer's Drug Discovery Foundation, New York, NY, USA.
Carole HoDenali Therapeutics, San Francisco, CA, USA.
Robert PaulAlector, Inc., South San Francisco, CA, USA.
Rodney PearlmanThe Bluefield Project, San Francisco, CA, USA.
Margaret SutherlandChan Zuckerberg Initiative, Redwood City, CA, USA.
Ajay VermaUnited Neuroscience, Dublin, Ireland.
Stephen P ArnericCritical Path Institute, Tucson, AZ, USA.
Brian M AlexanderDana-Farber Cancer Institute, Harvard University, Boston, MA, USA.
Bradford C DickersonDepartment of Neurology, Massachusetts General Hospital, Boston, MA, USA.
Earl Ray DorseyCenter for Health and Technology, University of Rochester, Rochester, NY, USA.
Murray GrossmanDepartment of Neurology, University of Pennsylvania, Philadelphia, PA, USA.
Edward D HueyDepartments of Psychiatry and Neurology, Columbia University, NY, USA.
Michael C IrizarryFormerly of Early Phase Neurosciences, Eli Lilly, Indianapolis, IN, USA.
William J MarksClinical Neurology, Verily Life Sciences, South San Francisco, CA, USA.
Mario MasellisHurvitz Brain Sciences Research Program, Sunnybrook Research Institute, University of Toronto, ON, Canada.
Frances McFarlandMcFarland Writing, Annapolis, MD, USA.
Debra NiehoffAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Chiadi U OnyikeDepartment Geriatric Psychiatry and Neuropsychiatry, Johns Hopkins University, Baltimore, MD, USA.
Sabrina PaganoniHealey Center for ALS, Massachusetts General Hospital, Boston, MA, USA.
Michael A PanzaraDevelopment, Wave Life Sciences, Boston, MA, USA.
Kenneth RockwoodDivision of Geriatric Medicine, Dalhousie University, Halifax, NS, Canada.
Jonathan D RohrerDementia Research Centre, UCL Institute of Neurology, Queen Square, London, UK.
Howard RosenMemory and Aging Center, Department of Neurology, University of California San Francisco, San Francisco, CA, USA.
Robert N SchuckOffice of Clinical Pharmacology, Center for Drug Evaluation and Research, FDA, Silver Spring, MD, USA.
Holly D SoaresDepartment of Neurology, AbbVie, Chicago, IL, USA.
Nadine TattonAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Association for Frontotemporal Degeneration · USAbbVie (United States) · USMassachusetts General Hospital · USUniversity Memory and Aging Center · USAlector (United States) · USAlzheimer's Drug Discovery Foundation · USBluefield College · USCenter for Drug Evaluation and Research · USChan Zuckerberg Initiative (United States) · USColumbia University · USCritical Path Institute · USDalhousie University · CADana-Farber Cancer Institute · USDenali Therapeutics (United States) · USEli Lilly (United States) · USJohns Hopkins Medicine · USMaryland Department of Natural Resources · USMayo Clinic in Arizona · USNational Hospital for Neurology and Neurosurgery · GBUniversity of California, San Diego · US

Funding

Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI Bradley F Boeve · 2019 to 2026
$120.9M
RECRUITMENT COREU19AG010483 · NIA · UNIVERSITY OF CALIFORNIA, SAN DIEGO · PI FELDMAN, HOWARD · 2013 to 2020
$80.6M
TDP-43 Loss-of-Function: Biology to BiomarkersP01AG019724 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Jennifer Merrilees · 2002 to 2026
$67.2M
Research Education ComponentP30AG062421 · NIA · MASSACHUSETTS GENERAL HOSPITAL · PI STEVEN E ARNOLD · 2019 to 2026
$36.5M
Understanding Environmental Contributions to Heterogeneity in bvFTD.P01AG066597 · NIA · UNIVERSITY OF PENNSYLVANIA · PI David John Irwin, Corey T McMillan · 2020 to 2026
$18.8M
The Four Repeat Tauopathy Neuroimaging InitiativeR01AG038791 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2010 to 2020
$18.1M
Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS)U01AG045390 · NIA · MAYO CLINIC ROCHESTER · PI BOEVE, BRADLEY F, ROSEN, HOWARD J · 2014 to 2018
$16.9M
Training - The Frontotemporal Lobar Degeneration Clinical Research ConsortiumU54NS092089 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2014 to 2018
$6.4M
Neuroanatomical associations with the factor structure underlying neuropsychiatric symptoms in Alzheimer's diseaseR01AG062268 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI HUEY, EDWARD D · 2018 to 2022
$2.5M
Using RDoC Negative and Positive Valence Paradigms to Investigate the Mechanisms of Neuropsychiatric Symptoms (NPS) in Alzheimer's Disease and Related DementiasR01MH120794 · NIMH · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI HUEY, EDWARD D · 2019 to 2023
$2.1M
Multimodal Imaging in Frontotemporal DegenerationK24AG045333 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI ROSEN, HOWARD J · 2013 to 2023
$1.9M
NIA NIH HHS K24 AG045333NIA NIH HHS P01 AG019724NIA NIH HHS P01 AG066597NIA NIH HHS P30 AG062421NIA NIH HHS R01 AG038791NIA NIH HHS R01 AG062268NIA NIH HHS U01 AG045390NIA NIH HHS U19 AG010483NIA NIH HHS U19 AG063911NIH HHS U54NS092089NIMH NIH HHS R01 MH120794NINDS NIH HHS U54 NS092089
6 · The paper itself

Abstract

introductionFrontotemporal lobar degeneration (FTLD) is the most common form of dementia for those under 60 years of age. Increasing numbers of therapeutics targeting FTLD syndromes are being developed.

methodsIn March 2018, the Association for Frontotemporal Degeneration convened the Frontotemporal Degeneration Study Group meeting in Washington, DC, to discuss advances in the clinical science of FTLD.

resultsChallenges exist for conducting clinical trials in FTLD. Two of the greatest challenges are (1) the heterogeneity of FTLD syndromes leading to difficulties in efficiently measuring treatment effects and (2) the rarity of FTLD disorders leading to recruitment challenges. DISCUSSION: New personalized endpoints that are clinically meaningful to individuals and their families should be developed. Personalized approaches to analyzing MRI data, development of new fluid biomarkers and wearable technologies will help to improve the power to detect treatment effects in FTLD clinical trials and enable new, clinical trial designs, possibly leveraged from the experience of oncology trials. A computational visualization and analysis platform that can support novel analyses of combined clinical, genetic, imaging, biomarker data with other novel modalities will be critical to the success of these endeavors.

Indexed as

BiomarkersClinical Trials as TopicMagnetic Resonance ImagingAtrophyCongresses as TopicFrontotemporal Lobar DegenerationHumansBiomarkersARTFLBiomarkerC9orf72Clinical trialFrontotemporal dementiaFrontotemporal lobar degenerationFTDFTLDGRNLEFFTDSMAPTPrimary progressive aphasiaProgressive supranuclear palsy

Identifiers

PMID31668596
PMCPMC6949386
OpenAlexW2981318929

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.