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@ARTICLE{Costello:281788,
      author       = {Costello, Emmet and De Vocht, Joke and Beswick, Emily and
                      Mac Domhnaill, Éanna and Peelo, Colm and Foucher, Juliette
                      and Mayberry, Emily J and Chiwera, Theresa and Hiemstra,
                      Fenna and Caravaca Puchades, Alejandro and Iazzolino,
                      Barbara and Palumbo, Francesca and Alves, Inês and Kasper,
                      Elisabeth and Galvin, Miriam and Heverin, Mark and Ingre,
                      Caroline and Mcdermott, Christopher J and Shaw, Pamela and
                      Al-Chalabi, Ammar and Van Den Berg, Leonard H and Povedano
                      Panadés, Mónica and Chiò, Adriano and Carvalho, Mamede De
                      and Bencheikh, Sofiane and Corcia, Philippe and Mouzouri,
                      Mohammed and Hermann, Andreas and Abrahams, Sharon and
                      Pender, Niall and Van Damme, Philip and Hardiman, Orla},
      title        = {{N}europsychological assessment practices in
                      {PRECISION}-{ALS}: challenges and opportunities for
                      harmonization.},
      journal      = {Amyotrophic lateral sclerosis $\&$ frontotemporal
                      degeneration},
      volume       = {26},
      number       = {7-8},
      issn         = {2167-8421},
      address      = {Abingdon},
      publisher    = {Taylor Francis Group},
      reportid     = {DZNE-2025-01181},
      pages        = {748 - 757},
      year         = {2025},
      abstract     = {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.},
      keywords     = {Humans / Neuropsychological Tests: standards / Amyotrophic
                      Lateral Sclerosis: psychology / Amyotrophic Lateral
                      Sclerosis: diagnosis / Amyotrophic Lateral Sclerosis:
                      complications / Male / Longitudinal Studies / Female /
                      Cognitive Dysfunction: diagnosis / Cognitive Dysfunction:
                      etiology / Amyotrophic Lateral Sclerosis (Other) / Cognition
                      (Other) / ECAS (Other) / behaviour (Other)},
      cin          = {AG Teipel / AG Hermann},
      ddc          = {610},
      cid          = {I:(DE-2719)1510100 / I:(DE-2719)1511100},
      pnm          = {353 - Clinical and Health Care Research (POF4-353)},
      pid          = {G:(DE-HGF)POF4-353},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40689468},
      doi          = {10.1080/21678421.2025.2527877},
      url          = {https://pub.dzne.de/record/281788},
}