Article

Quality of life data for individuals affected by Spinal Muscular Atrophy: A baseline dataset from the Cure SMA Community Update Survey

2020-07-07

Abstract excerpt

<title>Abstract</title> <p>BACKGROUND Individuals and/or caregivers of individuals affected by Spinal Muscular Atrophy (SMA) completed the 2019 Cure SMA Community Update Survey, online, assessing health-related quality of life (HRQoL), loss of work productivity, and fatigue using the Health Utilities Index Questionnaire (HUI), the Work Productivity and Activity Impairment Questionnaire (WPAI), and the Patient Re...

Topics

Open a Topic to create a Post that cites this publication.

Identifiers and source

Literature Corpus work: a32860ba-1c27-54f1-b183-b1229729233a
DOI: 10.21203/rs.3.rs-26971/v2

Open publication

Related research

Semantic proximity does not establish scientific evidence.

Click a neighbor to travelStep 1 · 12 closest

Quality of life data for individuals affected by Spinal Muscular Atrophy: A baseline dataset from the Cure SMA Community Update SurveyDOI 10.21203/rs.3.rs-26971/v2Read

Impact of Spinal Muscular Atrophy on Caregivers’ Daily Activities and Health-Related Quality of LifeSemantic proximity Read

Impact of Spinal Muscular Atrophy on Caregivers’ Daily Activities and Health-related Quality of LifeSemantic proximity Read

A qualitative, mixed-method approach to reaching consensus on function, fatigue, and fatigability outcomes in teens and adults living with spinal muscular atrophySemantic proximity Read

A self-reported Brazilian registry of spinal muscular atrophy: data from natural history, genetic characteristics, and multidisciplinary careSemantic proximity Read

Deficiencies in the medical care of SMA: evidence from a nationwide patient registry in GermanySemantic proximity Read

Pain in Spinal Muscular Atrophy: A systematic reviewSemantic proximity Read

New SMA era: A broad-range tiered assessment of function for the evolving SMA phenotype (EVOLVE-SMA).Semantic proximity Read

A self-reported Brazilian registry of 5q-spinal muscular atrophy: data on natural history, genetic characteristics, and multidisciplinary care.Semantic proximity Read

Dysphagia Phenotypes in Spinal Muscular Atrophy: The Past, Present, and Promise for the Future.Semantic proximity Read

Identifying Biomarkers of Spinal Muscular Atrophy for Further Development.Semantic proximity Read

Development of patient-reported outcome for spinal and bulbar muscular atrophySemantic proximity Read

Biomarkers in 5q-associated spinal muscular atrophy-a narrative review.Semantic proximity Read