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000281788 1001_ $$00000-0001-8620-9531$$aCostello, Emmet$$b0
000281788 245__ $$aNeuropsychological assessment practices in PRECISION-ALS: challenges and opportunities for harmonization.
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000281788 520__ $$aTo gather comprehensive insights regarding current neuropsychological assessment practices in PRECISION-ALS, a pan-European research and industry consortium, to propose areas which can be harmonized and facilitate more robust cross-country comparisons.Representatives from PRECISION-ALS sites were surveyed with a semi-structured interview, gathering information on how people with ALS are assessed for cognitive/behavioral change, including how they are initially screened, classified as impaired/unimpaired, and followed up longitudinally. Assessment practices across PRECISION-ALS sites were summarized using descriptive analysis.Ten of the eleven PRECISION-ALS sites perform cognitive and/or behavioral screening at least once during the course of the disease, using the Edinburgh Cognitive and Behavioral ALS Screen, either for clinical or research purposes. All centers categorize impairment, but differ how it is defined, with some using local norms, and others using other countries' norms. Most sites account for age and education, but differ in how these factors are considered. Longitudinal protocols vary in terms of the number of assessments, time intervals, and use of alternative versions. Behavioral screening is more consistently implemented, with the ECAS caregiver interview as the standard tool, however there is a lack of clarity in how this data is applied. Many sites supplement cognitive and behavioral screening with additional measures of mood and/or neuropsychiatric symptoms.These findings illustrate areas of commonality and divergence in neuropsychological screening practices. Site-specific variations are likely to confound research involving cross-country data-sharing. PRECISION-ALS, in generating prospective population-based datasets, will provide agreed harmonized protocols for neuropsychological assessment across participating sites.
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000281788 650_7 $$2Other$$aAmyotrophic Lateral Sclerosis
000281788 650_7 $$2Other$$aCognition
000281788 650_7 $$2Other$$aECAS
000281788 650_7 $$2Other$$abehaviour
000281788 650_2 $$2MeSH$$aHumans
000281788 650_2 $$2MeSH$$aNeuropsychological Tests: standards
000281788 650_2 $$2MeSH$$aAmyotrophic Lateral Sclerosis: psychology
000281788 650_2 $$2MeSH$$aAmyotrophic Lateral Sclerosis: diagnosis
000281788 650_2 $$2MeSH$$aAmyotrophic Lateral Sclerosis: complications
000281788 650_2 $$2MeSH$$aMale
000281788 650_2 $$2MeSH$$aLongitudinal Studies
000281788 650_2 $$2MeSH$$aFemale
000281788 650_2 $$2MeSH$$aCognitive Dysfunction: diagnosis
000281788 650_2 $$2MeSH$$aCognitive Dysfunction: etiology
000281788 7001_ $$aDe Vocht, Joke$$b1
000281788 7001_ $$aBeswick, Emily$$b2
000281788 7001_ $$aMac Domhnaill, Éanna$$b3
000281788 7001_ $$aPeelo, Colm$$b4
000281788 7001_ $$aFoucher, Juliette$$b5
000281788 7001_ $$00000-0002-4217-3941$$aMayberry, Emily J$$b6
000281788 7001_ $$aChiwera, Theresa$$b7
000281788 7001_ $$aHiemstra, Fenna$$b8
000281788 7001_ $$aCaravaca Puchades, Alejandro$$b9
000281788 7001_ $$aIazzolino, Barbara$$b10
000281788 7001_ $$aPalumbo, Francesca$$b11
000281788 7001_ $$aAlves, Inês$$b12
000281788 7001_ $$0P:(DE-2719)9000419$$aKasper, Elisabeth$$b13$$udzne
000281788 7001_ $$aGalvin, Miriam$$b14
000281788 7001_ $$aHeverin, Mark$$b15
000281788 7001_ $$aIngre, Caroline$$b16
000281788 7001_ $$00000-0002-1269-9053$$aMcdermott, Christopher J$$b17
000281788 7001_ $$aShaw, Pamela$$b18
000281788 7001_ $$00000-0002-4924-7712$$aAl-Chalabi, Ammar$$b19
000281788 7001_ $$aVan Den Berg, Leonard H$$b20
000281788 7001_ $$aPovedano Panadés, Mónica$$b21
000281788 7001_ $$aChiò, Adriano$$b22
000281788 7001_ $$00000-0001-7556-0158$$aCarvalho, Mamede De$$b23
000281788 7001_ $$aBencheikh, Sofiane$$b24
000281788 7001_ $$aCorcia, Philippe$$b25
000281788 7001_ $$aMouzouri, Mohammed$$b26
000281788 7001_ $$0P:(DE-2719)2811732$$aHermann, Andreas$$b27$$udzne
000281788 7001_ $$aAbrahams, Sharon$$b28
000281788 7001_ $$aPender, Niall$$b29
000281788 7001_ $$aVan Damme, Philip$$b30
000281788 7001_ $$aHardiman, Orla$$b31
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