Evidence map›Paper›PMID 32656921›Full record

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

Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort.

Melanie T Gentry, Maria I Lapid, Jeremy Syrjanen, Kendrick Calvert, Samantha Hughes, Danielle Brushaber, Walter Kremers, Jessica Bove, Patrick Brannelly, Giovanni Coppola and 54 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 8 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed, 1 pooled it
1.7field-weighted citation impact, top 16% 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

8 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.

  1. Pooled it
  2. Review
  3. Frontotemporal lobar degeneration.Nature reviews. Disease primers · 2023
    Review
  4. Article
  5. The contribution of behavioral features to caregiver burden in FTLD spectrum disorders.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022
    Article
  6. Article
  7. Metaphors for the Meaning of Caring for a Spouse with Dementia.Journal of multidisciplinary healthcare · 2021
    Article
  8. 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

64 authors at 20 institutions in 3 countries.

Melanie T GentryMayo Clinic, Rochester, Minnesota, USA.
Maria I LapidMayo Clinic, Rochester, Minnesota, USA.
Jeremy SyrjanenMayo Clinic, Rochester, Minnesota, USA.
Kendrick CalvertMayo Clinic, Rochester, Minnesota, USA.
Samantha HughesMayo Clinic, Rochester, Minnesota, USA.
Danielle BrushaberMayo Clinic, Rochester, Minnesota, USA.
Walter KremersMayo Clinic, Rochester, Minnesota, USA.
Jessica BoveUniversity of Pennsylvania, Philadelphia, Pennsylvania, USA.
Patrick BrannellyTau Consortium, Rainwater Charitable Foundation, Fort Worth, Texas, USA.
Giovanni CoppolaUCLA, Los Angeles, California, USA.
Christina DheelMayo Clinic, Rochester, Minnesota, USA.
Bradley DickersonHarvard University/MGH, Boston, Massachusetts, USA.
Susan DickinsonAssociation for Frontotemporal Degeneration, Radnor, Pennsylvania, USA.
Kelley FaberNational Cell Repository for Alzheimer's Disease (NCRAD), Indiana University, Indianapolis, Indiana, USA.
Julie FieldsMayo Clinic, Rochester, Minnesota, USA.
Jamie FongUCSF, San Francisco, California, USA.
Tatiana ForoudNational Cell Repository for Alzheimer's Disease (NCRAD), Indiana University, Indianapolis, Indiana, USA.
Leah ForsbergMayo Clinic, Rochester, Minnesota, USA.
Ralitza GavrilovaMayo Clinic, Rochester, Minnesota, USA.
Deb GearhartMayo Clinic, Rochester, Minnesota, USA.
Nupur GhoshalWashington University, St. Louis, Missouri, USA.
Jill GoldmanColumbia University, New York, New York, USA.
Jonathan Graff-RadfordMayo Clinic, Rochester, Minnesota, USA.
Neill Graff-RadfordMayo Clinic, Jacksonville, Florida, USA.
Murray GrossmanUniversity of Pennsylvania, Philadelphia, Pennsylvania, USA.
Dana HaleyMayo Clinic, Jacksonville, Florida, USA.
Hilary HeuerUCSF, San Francisco, California, USA.
Ging-Yuek HsiungUniversity of British Columbia, Vancouver, British Columbia, Canada.
Edward HueyColumbia University, New York, New York, USA.
David IrwinUniversity of Pennsylvania, Philadelphia, Pennsylvania, USA.
David JonesMayo Clinic, Rochester, Minnesota, USA.
Lynne JonesWashington University, St. Louis, Missouri, USA.
Kejal KantarciMayo Clinic, Rochester, Minnesota, USA.
Anna KarydasUCSF, San Francisco, California, USA.
David KnopmanMayo Clinic, Rochester, Minnesota, USA.
John KornakUCSF, San Francisco, California, USA.
Joel KramerUCSF, San Francisco, California, USA.
Walter KukullNational Alzheimer's Coordinating Center (NACC), University of Washington, Seattle, Washington, USA.
Diane LucenteHarvard University/MGH, Boston, Massachusetts, USA.
Codrin LunguNational Institute of Neurological Disorders and Stroke (NINDS), Bethesda, Maryland, USA.
Ian MackenzieUniversity of British Columbia, Vancouver, British Columbia, Canada.
Masood ManoochehriColumbia University, New York, New York, USA.
Scott McGinnisHarvard University/MGH, Boston, Massachusetts, USA.
Bruce MillerUCSF, San Francisco, California, USA.
Rodney PearlmanBluefield Project, San Francisco, California, USA.
Len PetrucelliMayo Clinic, Jacksonville, Florida, USA.
Madeline PotterNational Cell Repository for Alzheimer's Disease (NCRAD), Indiana University, Indianapolis, Indiana, USA.
Rosa RademakersMayo Clinic, Jacksonville, Florida, USA.
Eliana Marisa RamosUCLA, Los Angeles, California, USA.
Katherine RankinUCSF, San Francisco, California, USA.
Katya RascovskyUniversity of Pennsylvania, Philadelphia, Pennsylvania, USA.
Pheth SengdyUniversity of British Columbia, Vancouver, British Columbia, Canada.
Leslie ShawUniversity of Pennsylvania, Philadelphia, Pennsylvania, USA.
Nadine TattonAssociation for Frontotemporal Degeneration, Radnor, Pennsylvania, USA.
Joanne TaylorUCSF, San Francisco, California, USA.
Arthur TogaLaboratory of Neuroimaging (LONI), USC, Los Angeles, California, USA.
John TrojanowskiUniversity of Pennsylvania, Philadelphia, Pennsylvania, USA.
Sandra WeintraubNorthwestern University, Chicago, Illinois, USA.
Bonnie WongHarvard University/MGH, Boston, Massachusetts, USA.
Zbigniew WszolekMayo Clinic, Jacksonville, Florida, USA.
Bradley F BoeveMayo Clinic, Rochester, Minnesota, USA.
Adam BoxerUCSF, San Francisco, California, USA.
Howard RosenUCSF, San Francisco, California, USA.
LEFFTDS ConsortiumMayo Clinic, Rochester, Minnesota, USA.
Mayo Clinic · USUniversity of California, San Francisco · USUniversity of Pennsylvania · USCity College of San Francisco · USUniversity of Massachusetts Boston · USColumbia University · USIndiana University – Purdue University Indianapolis · USJacksonville College · USUniversity of British Columbia · CAAssociation for Frontotemporal Degeneration · USUCLA Health · USWashington University in St. Louis · USBlueenergy · USCognitive Neuroimaging Lab · FRMayo Clinic in Florida · USNational Institute of Neurological Disorders and Stroke · USNorthwestern University · USRainwater Charitable Foundation · USThe Coordinating Center · USWinnMed · 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 CoreP30AG066462 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Andrew Franklin Teich · 2020 to 2026
$30.1M
USCADRC Diversity Supplement PachicanoP30AG066530 · NIA · UNIVERSITY OF SOUTHERN CALIFORNIA · PI HELENA Chang CHUI, ARTHUR W TOGA · 2020 to 2026
$27.8M
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 AG066462NIA NIH HHS P30 AG066530NIA 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

objectiveThe Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects evaluates familial frontotemporal lobar degeneration (FTLD) kindreds with MAPT, GRN, or C9orf72 mutations. Objectives were to examine whether health-related quality of life (HRQoL) correlates with clinical symptoms and caregiver burden, and whether self-rated and informant-rated HRQoL would correlate with each other.

methodsIndividuals were classified using the Clinical Dementia Rating (CDR

resultsThe cohort of 312 individuals included symptomatic and asymptomatic individuals. CDR

conclusionLower HRQoL was associated with higher cognitive/behavior impairment and higher caregiver burden. These findings demonstrate the negative impact of FTLD on individuals and caregivers.

Indexed as

Cost of IllnessFrontotemporal Lobar DegenerationAdolescentAdultAgedAged, 80 and overCaregiversCohort StudiesFemaleHumansLongitudinal StudiesMaleMiddle AgedQuality of LifeYoung AdultC9orf72frontotemporal dementiaGRNMAPTquality of lifetauTDP-43

Identifiers

PMID32656921
PMCPMC7534513
OpenAlexW3043163034

What OpenQuestion holds

Textmetadata
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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.