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  1. New medicine for neuromuscular diseases: An evolving paradox for patient and family hopes and expectations.Annette F. Mahoney & Charlotte Handberg - 2023 - Nursing Inquiry 30 (2):e12527.
    Recent developments in novel therapies for neuromuscular diseases offer parents new perspectives on their affected children's future. This article examines how the emergence of new therapies impacts the lives of parents of children with Duchenne muscular dystrophy or spinal muscular atrophy type 2, two genetic neuromuscular disorders characterized by progressive muscle degeneration. Aiming for a first‐person perspective, fieldwork was conducted utilizing participant observation, semistructured interviews, and several internet sources. Six families with a total of 12 persons, all living in Denmark, (...)
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  • Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part.Malou Luchtenberg, Els Maeckelberghe, Louise Locock, Lesley Powell & A. A. Eduard Verhagen - 2015 - American Journal of Bioethics 15 (11):3-13.
    Given the lack of knowledge about safety and efficacy of many treatments for children, pediatric clinical trials are important, but recruitment for pediatric research is difficult. Little is known about children's perspective on participating in trials. The purpose of this study was to understand the experiences and motivations of young people who took part in clinical trials. This is a qualitative interview study of 25 young people aged 10–23 who were invited to take part in clinical trials. Interviews were audio (...)
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