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Sleep is relevant in the patient care as it impacts on health, functioning, and well-being. LGMDR9 may potentially affect sleep by physical or emotional symptoms, myalgia, or sleep-disordered breathing (SDB) through cardiorespiratory involvement. The objective was to investigate the occurrence of insomnia and unrecognized or untreated SDB in LGMDR9, associated factors, and relationships with fatigue and health-related quality of life (HRQoL). All 90 adults in a Norwegian LGMDR9 cohort received questionnaires on sleep, fatigue, and HRQoL. Forty-nine of them underwent clinical assessments and 26 without mask-based therapy for respiration disorders additionally underwent polysomnography (PSG) and capnometry. Among 77 questionnaire respondents, 31% received mask-based therapy. The prevalence of insomnia was 32% of both those with and without such therapy but was significantly increased in fatigued respondents (54% vs 21%). Insomnia levels correlated inversely with mental HRQoL. Among 26 PSG candidates, an apnea\u2013hypopnea index (AHI)\u2009\u2265\u20095\/h was observed in 16\/26 subjects (\u2265\u200915\/h in 8\/26) with median 6.8 obstructive apneas and 0.2 central apneas per hour of sleep. The AHI was related to advancing age and an ejection fraction\u2009&lt;\u200950%. Sleep-related hypoventilation was detected in one subject. Fatigue severity did not correlate with motor function or\u00a0nocturnal metrics of respiration or sleep but with Maximal Inspiratory Pressure (r\u2009=\u2009\u2212\u00a00.46). The results indicate that insomnia and SDB are underrecognized comorbidities in LGMDR9 and associated with\u00a0HRQoL\u00a0impairment and heart failure, respectively. We propose an increased attention to insomnia and SDB in the interdisciplinary care of LGMDR9. Insomnia and pulmonary function should be examined in fatigued patients.<\/jats:p>","DOI":"10.1007\/s00415-023-11978-7","type":"journal-article","created":{"date-parts":[[2023,9,11]],"date-time":"2023-09-11T11:02:42Z","timestamp":1694430162000},"page":"274-288","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Insomnia and sleep-disordered breathing in FKRP-related limb-girdle muscular dystrophy R9. The Norwegian LGMDR9 cohort study (2020)"],"prefix":"10.1007","volume":"271","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9204-5916","authenticated-orcid":false,"given":"Synn\u00f8ve","family":"Jensen","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karin","family":"Abeler","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oddgeir","family":"Friborg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Assami","family":"Rosner","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caroline","family":"Olsborg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Svein Ivar","family":"Mellgren","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kai Ivar","family":"M\u00fcller","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andreas Dybesland","family":"Rosenberger","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Monica L.","family":"Vold","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kjell Arne","family":"Arntzen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,9,11]]},"reference":[{"key":"11978_CR1","doi-asserted-by":"publisher","first-page":"2851","DOI":"10.1093\/hmg\/10.25.2851","volume":"10","author":"M Brockington","year":"2001","unstructured":"Brockington M, Yuva Y, Prandini P et al (2001) Mutations in the fukutin-related protein gene (FKRP) identify limb girdle muscular dystrophy 2I as a milder allelic variant of congenital muscular dystrophy MDC1C. 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Agreements for use of the licensed forms (Fatigue Severity Scale, the Epworth Sleepiness Scale, and the Individualized Neuromuscular Quality of Life questionnaire) were obtained. Permission to use the Bergen Insomnia Scale was obtained by correspondence with the Norwegian Competence\u00a0Center for Sleep\u00a0Disorders and the respiratory questionnaire by correspondence\u00a0with the Norwegian Register for Long-Term Mechanical Ventilation and with B. Midgren. The Norwegian version of the 36-item Short\u00a0Form Health Survey version 1 was freely distributed by The Knowledge Centre for the Health Services, Norwegian Institute of Public Health. 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