Evaluation of a Case Management to Support Families With Children Diagnosed With Spinal Muscular Atrophy—Protocol of a Controlled Mixed-Methods Study

Evaluation of a Case Management to Support Families With Children Diagnosed With Spinal Muscular Atrophy—Protocol of a Controlled Mixed-Methods Study

Background: Spinal muscular atrophy (SMA) is a rare neuromuscular disease characterized by degeneration of the anterior horn cells in the spinal cord, resulting in muscle atrophy, and proximal muscle weakness. SMA presents with a wide range of symptoms requiring multiple clinical specialists and the...

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Bibliographic Details
Main Authors: Jana Willems, Erik Farin-Glattacker, Thorsten Langer
Format: Article
Language:English
Published: Frontiers Media S.A. 2021-08-01
Series:Frontiers in Pediatrics
Subjects:
case management
family-reported outcomes
care integration
participatory research
rare neuromuscular disorders
spinal muscular atrophy
Online Access:https://www.frontiersin.org/articles/10.3389/fped.2021.614512/full

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