Jensen, Synnøve http://orcid.org/0000-0001-9204-5916
Abeler, Karin
Friborg, Oddgeir
Rosner, Assami
Olsborg, Caroline
Mellgren, Svein Ivar
Müller, Kai Ivar
Rosenberger, Andreas Dybesland
Vold, Monica L.
Arntzen, Kjell Arne
Funding for this research was provided by:
Helse Nord RHF (HNF1535-20)
Norwegian National Advisory Unit on Rare Disorders
Norwegian Competence Center for Sleep Disorders
Mr. Roar Orekåsa
Neuromuscular Disorders Association of Norway
UiT The Arctic University of Norway
Article History
Received: 20 May 2023
Revised: 25 August 2023
Accepted: 28 August 2023
First Online: 11 September 2023
Declarations
:
: The authors declare that they have no conflict of interest.
: The study was approved by the Regional Committee for Medical and Health Research Ethics of Northern Norway (2018/1968/REK nord), and by the Data Protection Officer at University Hospital of North Norway (UNN), and therefore performed in accordance with the Declaration of Helsinki and its later amendments. Agreements for use of the licensed forms (Fatigue Severity Scale,Footnote removed the Epworth Sleepiness Scale,Footnote removed and the Individualized Neuromuscular Quality of Life questionnaireFootnote removed) were obtained. Permission to use the Bergen Insomnia Scale was obtained by correspondence with the Norwegian Competence Center for Sleep Disorders and the respiratory questionnaire by correspondence with the Norwegian Register for Long-Term Mechanical Ventilation and with B. Midgren. The Norwegian version of the 36-item Short Form Health Survey version 1 was freely distributed by The Knowledge Centre for the Health Services, Norwegian Institute of Public Health. The assessors of the 32-item Motor Function Measure were certified by the AFEHM association (Aide aux Familles d’Enfant Handicapé Moteur).
: All persons provided written informed consent for the collection and use of clinical data prior to their inclusion in the study.