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The aim of this study was to determine the characteristics and impact of pain on quality of life (QoL) in patients with FSHD.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We analyzed patient reported outcome measures collected through the U.K. FSHD Patient Registry.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Of 398 patients, 88.6% reported pain at the time of study. The most frequent locations were shoulders and lower back. A total of 203 participants reported chronic pain, 30.4% of them as severe. The overall disease impact on QoL was significantly higher in patients with early onset and long disease duration. Chronic pain had a negative impact on all Individualised Neuromuscular Quality of Life Questionnaire domains and overall disease score.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion<\/jats:title><jats:p>Our study shows that pain in FSHD type 1 (FSHD1) is frequent and strongly impacts on QoL, similar to other chronic, painful disorders. Management of pain should be considered when treating FSHD1 patients. <jats:italic>Muscle Nerve<\/jats:italic> <jats:bold>57<\/jats:bold>: 380\u2013387, 2018<\/jats:p><\/jats:sec>","DOI":"10.1002\/mus.25991","type":"journal-article","created":{"date-parts":[[2017,10,20]],"date-time":"2017-10-20T16:03:54Z","timestamp":1508515434000},"page":"380-387","source":"Crossref","is-referenced-by-count":55,"title":["Chronic pain has a strong impact on quality of life in facioscapulohumeral muscular dystrophy"],"prefix":"10.1002","volume":"57","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7608-2194","authenticated-orcid":false,"given":"Germ\u00e1n","family":"Mor\u00eds","sequence":"first","affiliation":[{"name":"MRC Centre for Neuromuscular Diseases, Institute of Genetic Medicine Newcastle University, Central Parkway Newcastle upon Tyne NE1 3 BZ  United 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