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@ARTICLE{Soriano:279349,
author = {Soriano, Laura Del Hoyo and Sandkühler, Katja and Videla,
Laura and Benejam, Bessy and Carmona-Iragui, Maria and
Wlasich, Elisabeth and Kustermann, Julia and Barroeta,
Isabel and Vaqué-Alcázar, Lídia and Rodríguez-Baz,
Íñigo and Bejanin, Alexandre and Fernández, Susana and
Arranz, Javier and Arriola-Infante, Jose Enrique and
Maure-Blesa, Lucia and Juan, Aida San and Nübling, Georg
and Wagemann, Olivia and Stockbauer, Anna and Hassenstab,
Jason and Levin, Johannes and Fortea, Juan},
title = {{D}iscrepancies in assessing intellectual disability levels
in adults with {D}own syndrome: {I}mplications for dementia
diagnosis.},
journal = {Alzheimer's and dementia},
volume = {21},
number = {6},
issn = {1552-5260},
address = {Hoboken, NJ},
publisher = {Wiley},
reportid = {DZNE-2025-00726},
pages = {e70307},
year = {2025},
abstract = {Cut-offs derived from baseline cognitive assessments,
stratified by intellectual disability (ID) level, have been
proposed to diagnose symptomatic Alzheimer's disease (AD) in
Down syndrome (DS). However, discrepancies in ID
classification risk misclassification when applying cut-offs
across sites.This dual-center cohort study included 673
adults with mild to moderate ID at different AD stages. We
assessed ID classification discrepancies across sites and
the impact on Cambridge Cognitive Examination for Older
Adults with Down's Syndrome (CAMCOG-DS) cut-offs for AD
dementia diagnosis derived from receiver operating
characteristic analysis.Inter-rater agreement for ID level
classification was $95\%$ within sites but $60\%$ between
sites. While CAMCOG-DS score distributions in the whole
cohort were similar across sites, ID classification
discrepancies caused higher cut-offs in Barcelona for mild
and moderate ID compared to Munich. Applying site-specific
cut-offs to another cohort reduced sensitivity and
specificity.Standardizing ID classification is critical for
generalizable cut-offs to accurately diagnose AD dementia
based on neuropsychological assessments in DS.CAMCOG-DS
cut-offs by intellectual disability level classify dementia
in Down syndrome. ID classification discrepancies between
sites impact CAMCOG-DS diagnostic cut-offs. Applying
site-specific cut-offs to other cohorts reduces sensitivity
and specificity. Standardized ID classification is essential
for generalizable cognitive cut-offs. Use site-specific
cut-offs until ID classification is standardized.},
keywords = {Humans / Down Syndrome: complications / Intellectual
Disability: diagnosis / Female / Male / Neuropsychological
Tests: statistics $\&$ numerical data / Cohort Studies /
Middle Aged / Aged / Dementia: diagnosis / Alzheimer
Disease: diagnosis / AD21 (Other) / Alzheimer's disease
(Other) / Cambridge Cognitive Examination for Older Adults
with Down Syndrome (Other) / Down Alzheimer Barcelona
Neuroimaging Initiative (Other) / Down syndrome (Other) /
Down syndrome–associated Alzheimer's disease (Other) /
cut‐off points (Other) / dementia (Other) / diagnostic
performance (Other) / intellectual disability (Other)},
cin = {Clinical Research (Munich) / AG Simons},
ddc = {610},
cid = {I:(DE-2719)1111015 / I:(DE-2719)1110008},
pnm = {353 - Clinical and Health Care Research (POF4-353) / 351 -
Brain Function (POF4-351)},
pid = {G:(DE-HGF)POF4-353 / G:(DE-HGF)POF4-351},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:40528393},
pmc = {pmc:PMC12173952},
doi = {10.1002/alz.70307},
url = {https://pub.dzne.de/record/279349},
}