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Article History

Received: 27 July 2020

Accepted: 20 January 2021

First Online: 22 February 2021

Ethics approval and consent to participate

: The clinical meaningfulness survey was approved by a US Institutional Review Board (Approval Number 1-11240001-1). Written informed consent was obtained from all adult respondents prior to the conduct of any research related activities. For minor adolescent respondents (ages 12–18), written consent from a parent/guardian was obtained, as well as the survey respondent’s assent thereafter. Regarding the awareness video contest, the project was submitted for and received IRB exemption for the purposes of retrospective analysis (Approval Number 1-1305771-1). All contest participants consented to publication and posting their videos on the Cure SMA YouTube page.

: All survey respondents and video contest participants. All participants provided written consent for participation in the study and the publication of the findings prior to research participation.

: AM, MC, LB, RC, and JJ are employees of Cure SMA and report grants for the Industry Collaboration, which provided funding for this project. The support received to conduct this study was noted and it does not result in a conflict of interest for any of the authors. The authors have indicated that they have no other conflicts of interest regarding the content of this article. Study sponsor did not participate in study design, collection, data analysis or interpretation of data or writing of the manuscript, it was the decision of Cure SMA to submit this manuscript for publication.