Evidence map›Paper›PMID 31636026›Full record

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

The longitudinal evaluation of familial frontotemporal dementia subjects protocol: Framework and methodology.

Bradley Boeve, Jessica Bove, Patrick Brannelly, Danielle Brushaber, Giovanni Coppola, Rielly Dever, Christina Dheel, Bradford Dickerson, Susan Dickinson, Kelley Faber and 52 more

Registry-linked trialOpen access · hybridAbstract read
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 45 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
45citing papers in PubMed, 1 pooled it
4.1field-weighted citation impact, top 6% 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

45 citing papers in PubMed, 1 synthesis or guideline pooled it, 58 citations in OpenAlex.

  1. Pooled it
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  16. A framework for translating tauopathy therapeutics: Drug discovery to clinical trials.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024
    Review
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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

62 authors at 15 institutions in 2 countries.

Bradley BoeveMayo Clinic, Rochester, MN, USA.
Jessica BoveUniversity of Pennsylvania, Philadelphia, PA, USA.
Patrick BrannellyTau Consortium, Rainwater Charitable Foundation, Fort Worth, TX, USA.
Danielle BrushaberMayo Clinic, Rochester, MN, USA.
Giovanni CoppolaUCLA, Los Angeles, CA, USA.
Rielly DeverUCSF, San Francisco, CA, USA.
Christina DheelMayo Clinic, Rochester, MN, USA.
Bradford DickersonHarvard University/MGH, Boston, MA, USA.
Susan DickinsonAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Kelley FaberNational Cell Repository for Alzheimer's Disease and Related Dementias (NCRAD), Indiana University, Indianapolis, IN, USA.
Julie FieldsMayo Clinic, Rochester, MN, USA.
Jamie FongUCSF, San Francisco, CA, USA.
Tatiana ForoudNational Cell Repository for Alzheimer's Disease and Related Dementias (NCRAD), Indiana University, Indianapolis, IN, USA.
Leah ForsbergMayo Clinic, Rochester, MN, USA.
Ralitza GavrilovaMayo Clinic, Rochester, MN, USA.
Debra GearhartMayo Clinic, Rochester, MN, USA.
Nupur GhoshalWashington University, St. Louis, MO, USA.
Jennifer GoldmanColumbia University, New York, NY, USA.
Jonathan Graff-RadfordMayo Clinic, Rochester, MN, USA.
Neill Graff-RadfordMayo Clinic, Jacksonville, FL, USA.
Murray GrossmanUniversity of Pennsylvania, Philadelphia, PA, USA.
Dana HaleyMayo Clinic, Jacksonville, FL, USA.
Hilary HeuerUCSF, San Francisco, CA, USA.
Ging-Yuek Robin HsiungUniversity of British Columbia, Vancouver, British Columbia, Canada.
Edward HueyColumbia University, New York, NY, USA.
David IrwinUniversity of Pennsylvania, Philadelphia, PA, USA.
David JonesMayo Clinic, Rochester, MN, USA.
Lynne JonesWashington University, St. Louis, MO, USA.
Kejal KantarciMayo Clinic, Rochester, MN, USA.
Anna KarydasUCSF, San Francisco, CA, USA.
David KnopmanMayo Clinic, Rochester, MN, USA.
John KornakUCSF, San Francisco, CA, USA.
Ruth KraftMayo Clinic, Rochester, MN, USA.
Joel KramerUCSF, San Francisco, CA, USA.
Walter KremersMayo Clinic, Rochester, MN, USA.
Walter KukullNational Alzheimer Coordinating Center (NACC), University of Washington, Seattle, WA, USA.
Maria LapidMayo Clinic, Rochester, MN, USA.
Diane LucenteHarvard University/MGH, Boston, MA, USA.
Ian MackenzieUniversity of British Columbia, Vancouver, British Columbia, Canada.
Masood ManoochehriColumbia University, New York, NY, USA.
Scott McGinnisHarvard University/MGH, Boston, MA, USA.
Bruce MillerUCSF, San Francisco, CA, USA.
Rodney PearlmanBluefield Project, San Francisco, CA, USA.
Len PetrucelliMayo Clinic, Jacksonville, FL, USA.
Madeline PotterNational Cell Repository for Alzheimer's Disease and Related Dementias (NCRAD), Indiana University, Indianapolis, IN, USA.
Rosa RademakersMayo Clinic, Jacksonville, FL, USA.
Eliana Marisa RamosUCLA, Los Angeles, CA, USA.
Kate RankinUCSF, San Francisco, CA, USA.
Katya RascovskyUniversity of Pennsylvania, Philadelphia, PA, USA.
Pheth SengdyUniversity of British Columbia, Vancouver, British Columbia, Canada.
Les ShawUniversity of Pennsylvania, Philadelphia, PA, USA.
Jeremy SyrjanenMayo Clinic, Rochester, MN, USA.
Nadine TattonAssociation for Frontotemporal Degeneration, Radnor, PA, USA.
Joanne TaylorUCSF, San Francisco, CA, USA.
Arthur TogaLaboratory of Neuroimaging (LONI), USC, Los Angeles, CA, USA.
John TrojanowskiUniversity of Pennsylvania, Philadelphia, PA, USA.
Sandra WeintraubNorthwestern University, Chicago, IL, USA.
Bonnie WongHarvard University/MGH, Boston, MA, USA.
Zbigniew WszolekMayo Clinic, Jacksonville, FL, USA.
Adam BoxerUCSF, San Francisco, CA, USA.
Howard RosenUCSF, San Francisco, CA, USA.
LEFFTDS Consortium
Mayo Clinic in Arizona · USUniversity of Pennsylvania · USHarvard University · USColumbia University · USIndiana University – Purdue University Indianapolis · USMayo Clinic in Florida · USUniversity of British Columbia · CAAssociation for Frontotemporal Degeneration · USUCLA Health · USWashington University in St. Louis · USWinnMed · USBluefield College · USNorthwestern University · USRainwater Charitable Foundation · USUniversity of Washington · US

Funding

Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI Bradley F Boeve · 2019 to 2026
$120.9M
National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD)U24AG021886 · NIA · INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS · PI TATIANA M. FOROUD · 2002 to 2026
$119.8M
NATIONAL ALZHEIMERS COORDINATING CENTER (NACC)U01AG016976 · NIA · UNIVERSITY OF WASHINGTON · PI KUKULL, WALTER ANTHONY · 1999 to 2020
$72.8M
TDP-43 Loss-of-Function: Biology to BiomarkersP01AG019724 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Jennifer Merrilees · 2002 to 2026
$67.2M
National Alzheimer's Coordinating CenterU24AG072122 · NIA · UNIVERSITY OF WASHINGTON · PI STEPHENS, KARI A · 2021 to 2025
$45.8M
Research Education ComponentP30AG062421 · NIA · MASSACHUSETTS GENERAL HOSPITAL · PI Christine S Ritchie · 2019 to 2026
$36.5M
Neuropathology CoreP30AG013854 · NIA · NORTHWESTERN UNIVERSITY AT CHICAGO · PI BIGIO, EILEEN H. · 1996 to 2020
$28.9M
Understanding Environmental Contributions to Heterogeneity in bvFTD.P01AG066597 · NIA · UNIVERSITY OF PENNSYLVANIA · PI David John Irwin, Corey T McMillan · 2020 to 2026
$18.8M
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
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 AG013854NIA NIH HHS P30 AG062421NIA NIH HHS U01 AG016976NIA NIH HHS U01 AG045390NIA NIH HHS U19 AG063911NIA NIH HHS U24 AG021886NIA NIH HHS U24 AG072122NINDS NIH HHS U54 NS092089
6 · The paper itself

Abstract

introductionIt is important to establish the natural history of familial frontotemporal lobar degeneration (f-FTLD) and provide clinical and biomarker data for planning these studies, particularly in the asymptomatic phase.

methodsThe Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects protocol was designed to enroll and follow at least 300 subjects for more than at least three annual visits who are members of kindreds with a mutation in one of the three most common f-FTLD genes-microtubule-associated protein tau, progranulin, or chromosome 9 open reading frame 72.

resultsWe present the theoretical considerations of f-FTLD and the aims/objectives of this protocol. We also describe the design and methodology for evaluating and rating subjects, in which detailed clinical and neuropsychological assessments are performed, biofluid samples are collected, and magnetic resonance imaging scans are performed using a standard protocol. DISCUSSION: These data and samples, which are available to interested investigators worldwide, will facilitate planning for upcoming disease-modifying therapeutic trials in f-FTLD.

Indexed as

Genetic Predisposition to DiseaseAdultC9orf72 ProteinFemaleFrontotemporal DementiaHumansLongitudinal StudiesMagnetic Resonance ImagingMaleMiddle AgedMutationNeuropsychological Teststau ProteinsC9orf72 ProteinC9orf72 protein, humanMAPT protein, humantau ProteinsC9orf72Frontotemporal dementiaGeneticsGRNMAPTTauTDP-43

Identifiers

PMID31636026
PMCPMC6949411
OpenAlexW2980420390

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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.