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Authors
Malina, Jekaterina
Huessler, Eva-Maria
Jöckel, Karl-Heinz
Boog-Whiteside, Eva
Jeschonneck, Nicole
Schröder, Bernadette
Schüle, Rebecca
Kühl, Tobias
Klebe, Stephan http://orcid.org/0000-0003-3363-4301
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Funding
Funding for this research was provided by:
Bundesministerium für Bildung und Forschung (01GM1905C, 01GM1905A)
Universitätsklinikum Essen
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Article History
Received: 29 September 2023
Accepted: 19 December 2023
First Online: 2 January 2024
Declarations
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: The study was approved by the institutional ethics committee of the University Hospital of Essen, Germany (19–9010-BO) and adhered to the tenets of the Declaration of Helsinki. Written informed consent was obtained from all HSP patients and caregivers prior the interviews. The pilot item validation, using printed questionnaires sent via mail, was anonymous; the mailing list itself, however, included only HSP patients from the patient cohort at the Department of Neurology, University Hospital Essen. The main validation, using the online questionnaire tool (UmfrageOnline® enuvo GmbH, Pfäffikon, Switzerland) was pseudonymous. Both pilot and modified questionnaire included written information about the study. No additional written consent was obtained from the responders.
: Not applicable.
: The authors declare that they have no competing interests.
