TY  - JOUR
AU  - Costello, Emmet
AU  - De Vocht, Joke
AU  - Beswick, Emily
AU  - Mac Domhnaill, Éanna
AU  - Peelo, Colm
AU  - Foucher, Juliette
AU  - Mayberry, Emily J
AU  - Chiwera, Theresa
AU  - Hiemstra, Fenna
AU  - Caravaca Puchades, Alejandro
AU  - Iazzolino, Barbara
AU  - Palumbo, Francesca
AU  - Alves, Inês
AU  - Kasper, Elisabeth
AU  - Galvin, Miriam
AU  - Heverin, Mark
AU  - Ingre, Caroline
AU  - Mcdermott, Christopher J
AU  - Shaw, Pamela
AU  - Al-Chalabi, Ammar
AU  - Van Den Berg, Leonard H
AU  - Povedano Panadés, Mónica
AU  - Chiò, Adriano
AU  - Carvalho, Mamede De
AU  - Bencheikh, Sofiane
AU  - Corcia, Philippe
AU  - Mouzouri, Mohammed
AU  - Hermann, Andreas
AU  - Abrahams, Sharon
AU  - Pender, Niall
AU  - Van Damme, Philip
AU  - Hardiman, Orla
TI  - Neuropsychological assessment practices in PRECISION-ALS: challenges and opportunities for harmonization.
JO  - Amyotrophic lateral sclerosis & frontotemporal degeneration
VL  - 26
IS  - 7-8
SN  - 2167-8421
CY  - Abingdon
PB  - Taylor Francis Group
M1  - DZNE-2025-01181
SP  - 748 - 757
PY  - 2025
AB  - To gather comprehensive insights regarding current neuropsychological assessment practices in PRECISION-ALS, a pan-European research and industry consortium, to propose areas which can be harmonized and facilitate more robust cross-country comparisons.Representatives from PRECISION-ALS sites were surveyed with a semi-structured interview, gathering information on how people with ALS are assessed for cognitive/behavioral change, including how they are initially screened, classified as impaired/unimpaired, and followed up longitudinally. Assessment practices across PRECISION-ALS sites were summarized using descriptive analysis.Ten of the eleven PRECISION-ALS sites perform cognitive and/or behavioral screening at least once during the course of the disease, using the Edinburgh Cognitive and Behavioral ALS Screen, either for clinical or research purposes. All centers categorize impairment, but differ how it is defined, with some using local norms, and others using other countries' norms. Most sites account for age and education, but differ in how these factors are considered. Longitudinal protocols vary in terms of the number of assessments, time intervals, and use of alternative versions. Behavioral screening is more consistently implemented, with the ECAS caregiver interview as the standard tool, however there is a lack of clarity in how this data is applied. Many sites supplement cognitive and behavioral screening with additional measures of mood and/or neuropsychiatric symptoms.These findings illustrate areas of commonality and divergence in neuropsychological screening practices. Site-specific variations are likely to confound research involving cross-country data-sharing. PRECISION-ALS, in generating prospective population-based datasets, will provide agreed harmonized protocols for neuropsychological assessment across participating sites.
KW  - Humans
KW  - Neuropsychological Tests: standards
KW  - Amyotrophic Lateral Sclerosis: psychology
KW  - Amyotrophic Lateral Sclerosis: diagnosis
KW  - Amyotrophic Lateral Sclerosis: complications
KW  - Male
KW  - Longitudinal Studies
KW  - Female
KW  - Cognitive Dysfunction: diagnosis
KW  - Cognitive Dysfunction: etiology
KW  - Amyotrophic Lateral Sclerosis (Other)
KW  - Cognition (Other)
KW  - ECAS (Other)
KW  - behaviour (Other)
LB  - PUB:(DE-HGF)16
C6  - pmid:40689468
DO  - DOI:10.1080/21678421.2025.2527877
UR  - https://pub.dzne.de/record/281788
ER  -