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Patient-reported impact of symptoms in adrenoleukodystrophy (PRISM-ALD)

Abstract Background Adrenoleukodystrophy (ALD) is a multifaceted, X-linked, neurodegenerative disorder that comprises several clinical phenotypes. ALD affects patients through a variety of physical, emotional, social, and other disease-specific factors that collectively contribute to disease burden....

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Auteurs principaux: Anika Varma, Jennifer Weinstein, Jamison Seabury, Spencer Rosero, Nuran Dilek, John Heatwole, Charlotte Engebrecht, Shaweta Khosa, Kaitlin Chung, Asif Paker, Amy Woo, Gregory Brooks, Chan Beals, Rohan Gandhi, Chad Heatwole
Format: Artigo
Langue:Inglês
Publié: BMC 2024-03-01
Collection:Orphanet Journal of Rare Diseases
Sujets:
Adrenoleukodystrophy
Adrenomyeloneuropathy
Symptom
Disease burden
Qualitative research
Patient interview
Accès en ligne:https://doi.org/10.1186/s13023-024-03129-6
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