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Experiences of caregivers of children with spinal muscular atrophy participating in the expanded access program for nusinersen: a longitudinal qualitative study

Crossref DOI link: https://doi.org/10.1186/s13023-020-01477-7

Published Online: 2020-07-29

Published Print: 2020-12

Update policy: https://doi.org/10.1007/springer_crossmark_policy

Authors

Kiefer, Petra

Kirschner, Janbernd

Pechmann, Astrid

Langer, Thorsten https://orcid.org/0000-0003-1756-4307
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Text and Data Mining valid from 2020-07-29

Version of Record valid from 2020-07-29
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Article History

Received: 11 September 2019

Accepted: 21 July 2020

First Online: 29 July 2020

Ethics approval and consent to participate

: The study was approved by the Medical Center University Freiburg ethics committee (Reference Number 578/16). Informed consent was received from all participants.

: Not applicable.

: PK has no competing interests to disclose. AP reports personal fees for presentations and training activities from Biogen, outside the submitted work; JK reports grants, personal fees, and nonfinancial support from Biogen; grants, personal, fees and nonfinancial support from Roche; personal fees and nonfinancial support from Avexis, outside the submitted work; TL participated in a sponsored workshop by Biogen.

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