Accès ouvert
2026
article
OpenAlex
William B. Nowell, Nadine McGale, Oren Levy, Sarah Wilding et autres
INTRODUCTION: This study aimed to explore the experience of living with amyotrophic lateral sclerosis (ALS) and to develop a conceptual model for this rare disease. METHODS: Concept elicitation interviews were conducted (January-September 2024) with people living with ALS (PLwALS; n = 31), …
us
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Accès ouvert
2025
article
OpenAlex
Laure Delbecque, Emma Elliott, Sophie Cleanthous, Phoebe Heinrich et autres
BACKGROUND AND OBJECTIVES: The integrated Alzheimer's Disease Rating Scale (iADRS) is a measure of cognition and daily function used to evaluate treatment effects in Alzheimer's disease (AD) clinical trials. This study aimed to assess the content validity of the iADRS in early …
us, gb
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Accès ouvert
2025
article
OpenAlex
Teofil Ciobanu, Louise Barrett, Evan Davies, Alexander P. Murphy et autres
Background: Duchenne Muscular Dystrophy (DMD) is a rare X-linked genetic disorder caused by mutations in the dystrophin gene. The North Star Ambulatory Assessment (NSAA) and Performance of Upper Limb (PUL) are used to measure motor performance in ambulatory and non-ambulatory individuals, respectively. …
ch, gb
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Accès ouvert
2024
article
OpenAlex
Alexandra S. Atkins, Laure Delbecque, Emma Elliott, Phoebe Heinrich et autres
BACKGROUND: 'Dependence' has been proposed as a measurable health outcome reflecting the overall impact of disease progression in Alzheimer's disease (AD). However, the meaning and relevance of 'dependence' in early symptomatic AD (MCI and mild AD dementia) have not been previously investigated. …
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Accès ouvert
2023
article
OpenAlex
Louise Barrett, Emma Elliott, Maarten Voorhaar, Anders Ingelgård et autres
INTRODUCTION: Pain and fatigue are commonly reported by patients with soft tissue sarcoma (STS) as distressing symptoms, yet no patient-reported outcome (PRO) measures have been validated or developed specifically for STS. This study aimed to develop novel PRO scales using existing item …
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