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Article History

Received: 9 October 2024

Accepted: 4 June 2025

First Online: 25 June 2025

Change Date: 5 August 2025

Change Type: Update

Change Details: The alignment of the Tables was corrected.

Declarations

:

: The study was conducted according to the guidelines of the Declaration of Helsinki. The study was approved by the ethics committee of Witten/Herdecke University (#121/2021).

: The consent to participate was given through voluntary anonymous participation in the questionnaire survey. Together with the questionnaire all members received an information letter about the procedure, the intention, etc. of the study. Due to the anonymous procedure, that was not appropriate to send an informed consent paper to be signed by a caregiver, because this would no longer have ensured anonymization. Thus sending a completed questionnaire to the study office constitutes an active decision to participate. Furthermore, the board of the “Angelman e.V.” consented to publication of the data.

: Not applicable.

: The authors declare no competing interests.