{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,26]],"date-time":"2026-10-26T03:28:35Z","timestamp":1792985315272,"version":"4.5.0"},"reference-count":38,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,3,26]],"date-time":"2026-03-26T00:00:00Z","timestamp":1774483200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"},{"start":{"date-parts":[[2026,5,19]],"date-time":"2026-05-19T00:00:00Z","timestamp":1779148800000},"content-version":"vor","delay-in-days":54,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Health Qual Life Outcomes"],"DOI":"10.1186\/s12955-026-02519-7","type":"journal-article","created":{"date-parts":[[2026,3,26]],"date-time":"2026-03-26T10:01:18Z","timestamp":1774519278000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Measuring health-related quality of life in facioscapulohumeral muscular dystrophy: a COSMIN systematic review and conceptual framework"],"prefix":"10.1186","volume":"24","author":[{"given":"Jill","family":"Carlton","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Philip","family":"Powell","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jon","family":"Street","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S\u00e9","family":"Frances","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Claire","family":"Williams","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anthea","family":"Sutton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Channa","family":"Hewamadduma","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,3,26]]},"reference":[{"issue":"3","key":"2519_CR1","doi-asserted-by":"publisher","first-page":"201","DOI":"10.1136\/practneurol-2015-001353","volume":"16","author":"K Mul","year":"2016","unstructured":"Mul K, Lassche S, Voermans NC, Padberg GW, Horlings CG, van Engelen BG. What\u2019s in a name? The clinical features of facioscapulohumeral muscular dystrophy. Pract Neurol Jun. 2016;16(3):201\u20137. https:\/\/doi.org\/10.1136\/practneurol-2015-001353.","journal-title":"Pract Neurol Jun"},{"issue":"4","key":"2519_CR2","doi-asserted-by":"publisher","first-page":"e378","DOI":"10.1212\/WNL.0000000000006819","volume":"22","author":"RJM Goselink","year":"2019","unstructured":"Goselink RJM, Mul K, van Kernebeek CR, et al. Early onset as a marker for disease severity in facioscapulohumeral muscular dystrophy. Neurology Jan. 2019;22(4):e378\u201385. https:\/\/doi.org\/10.1212\/WNL.0000000000006819.","journal-title":"Neurology Jan"},{"issue":"12","key":"2519_CR3","doi-asserted-by":"publisher","first-page":"1056","DOI":"10.1212\/WNL.0000000000000797","volume":"16","author":"JC Deenen","year":"2014","unstructured":"Deenen JC, Arnts H, van der Maarel SM, et al. Population-based incidence and prevalence of facioscapulohumeral dystrophy. Neurology Sep. 2014;16(12):1056\u20139. https:\/\/doi.org\/10.1212\/WNL.0000000000000797.","journal-title":"Neurology Sep"},{"issue":"1","key":"2519_CR4","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1089\/gte.2005.9.30","volume":"9","author":"R Sposito","year":"2005","unstructured":"Sposito R, Pasquali L, Galluzzi F, et al. Facioscapulohumeral muscular dystrophy type 1A in northwestern Tuscany: a molecular genetics-based epidemiological and genotype-phenotype study. Genet Test Spring. 2005;9(1):30\u20136. https:\/\/doi.org\/10.1089\/gte.2005.9.30.","journal-title":"Genet Test Spring"},{"issue":"1","key":"2519_CR5","doi-asserted-by":"publisher","first-page":"121","DOI":"10.1186\/s12955-019-1177-y","volume":"15","author":"MF Jacques","year":"2019","unstructured":"Jacques MF, Stockley RC, Onambele-Pearson GL, et al. Quality of life in adults with muscular dystrophy. Health Qual Life Outcomes Jul. 2019;15(1):121. https:\/\/doi.org\/10.1186\/s12955-019-1177-y.","journal-title":"Health Qual Life Outcomes Jul"},{"issue":"4","key":"2519_CR6","doi-asserted-by":"publisher","first-page":"520","DOI":"10.1002\/mus.23949","volume":"49","author":"JM Statland","year":"2014","unstructured":"Statland JM, Tawil R. Risk of functional impairment in Facioscapulohumeral muscular dystrophy. Muscle Nerve Apr. 2014;49(4):520\u20137. https:\/\/doi.org\/10.1002\/mus.23949.","journal-title":"Muscle Nerve Apr"},{"issue":"4","key":"2519_CR7","first-page":"377","volume":"29","author":"DA Revicki","year":"1989","unstructured":"Revicki DA. Health-related quality of life in the evaluation of medical therapy for chronic illness. J Fam Pract Oct. 1989;29(4):377\u201380.","journal-title":"J Fam Pract Oct"},{"issue":"5","key":"2519_CR8","doi-asserted-by":"publisher","first-page":"e267","DOI":"10.1016\/S1470-2045(18)30097-4","volume":"19","author":"PG Kluetz","year":"2018","unstructured":"Kluetz PG, O\u2019Connor DJ, Soltys K. Incorporating the patient experience into regulatory decision making in the USA, Europe, and Canada. Lancet Oncol May. 2018;19(5):e267\u201374. https:\/\/doi.org\/10.1016\/S1470-2045(18)30097-4.","journal-title":"Lancet Oncol May"},{"issue":"1","key":"2519_CR9","doi-asserted-by":"publisher","first-page":"7","DOI":"10.1002\/mus.27964","volume":"69","author":"R Murray","year":"2024","unstructured":"Murray R, Donnelly CM, Drescher KD, Graham CD. The lived experience of facioscapulohumeral muscular dystrophy: A systematic review and synthesis of the qualitative literature. Muscle Nerve Jan. 2024;69(1):7\u201317. https:\/\/doi.org\/10.1002\/mus.27964.","journal-title":"Muscle Nerve Jan"},{"issue":"12","key":"2519_CR10","doi-asserted-by":"publisher","first-page":"e1180","DOI":"10.1212\/WNL.0000000000008123","volume":"17","author":"J Hamel","year":"2019","unstructured":"Hamel J, Johnson N, Tawil R, et al. Patient-Reported Symptoms in Facioscapulohumeral Muscular Dystrophy (PRISM-FSHD). Neurology Sep. 2019;17(12):e1180\u201392. https:\/\/doi.org\/10.1212\/WNL.0000000000008123.","journal-title":"Neurology Sep"},{"issue":"2","key":"2519_CR11","doi-asserted-by":"publisher","first-page":"200","DOI":"10.1002\/mus.21308","volume":"40","author":"L Padua","year":"2009","unstructured":"Padua L, Aprile I, Frusciante R, et al. Quality of life and pain in patients with facioscapulohumeral muscular dystrophy. Muscle Nerve Aug. 2009;40(2):200\u20135. https:\/\/doi.org\/10.1002\/mus.21308.","journal-title":"Muscle Nerve Aug"},{"issue":"7","key":"2519_CR12","doi-asserted-by":"publisher","first-page":"737","DOI":"10.1016\/j.jclinepi.2010.02.006","volume":"63","author":"LB Mokkink","year":"2010","unstructured":"Mokkink LB, Terwee CB, Patrick DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol Jul. 2010;63(7):737\u201345. https:\/\/doi.org\/10.1016\/j.jclinepi.2010.02.006.","journal-title":"J Clin Epidemiol Jul"},{"issue":"5","key":"2519_CR13","doi-asserted-by":"publisher","first-page":"1147","DOI":"10.1007\/s11136-018-1798-3","volume":"27","author":"CAC Prinsen","year":"2018","unstructured":"Prinsen CAC, Mokkink LB, Bouter LM, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res May. 2018;27(5):1147\u201357. https:\/\/doi.org\/10.1007\/s11136-018-1798-3.","journal-title":"Qual Life Res May"},{"key":"2519_CR14","doi-asserted-by":"publisher","unstructured":"Bamber R, Stavroulakis T, McDermott C, Carlton J. Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures. Qual Life Res Jun. 2025;25. https:\/\/doi.org\/10.1007\/s11136-025-04012-y.","DOI":"10.1007\/s11136-025-04012-y"},{"issue":"23","key":"2519_CR15","doi-asserted-by":"publisher","first-page":"1096","DOI":"10.1212\/WNL.0000000000007618","volume":"4","author":"E Nobels-Janssen","year":"2019","unstructured":"Nobels-Janssen E, van der Wees PJ, Verhagen WIM, Westert GP, Bartels R, Boogaarts JD. Patient-reported outcome measures in subarachnoid hemorrhage: A systematic review. Neurology Jun. 2019;4(23):1096\u2013112. https:\/\/doi.org\/10.1212\/WNL.0000000000007618.","journal-title":"Neurology Jun"},{"issue":"10","key":"2519_CR16","doi-asserted-by":"publisher","first-page":"1034","DOI":"10.1212\/WNL.0000000000001336","volume":"10","author":"CM Bann","year":"2015","unstructured":"Bann CM, Abresch RT, Biesecker B, et al. Measuring quality of life in muscular dystrophy. Neurology Mar. 2015;10(10):1034\u201342. https:\/\/doi.org\/10.1212\/WNL.0000000000001336.","journal-title":"Neurology Mar"},{"issue":"1","key":"2519_CR17","doi-asserted-by":"publisher","first-page":"263","DOI":"10.1186\/s12955-020-01511-z","volume":"3","author":"PA Powell","year":"2020","unstructured":"Powell PA, Carlton J, Woods HB, Mazzone P. Measuring quality of life in Duchenne muscular dystrophy: a systematic review of the content and structural validity of commonly used instruments. Health Qual Life Outcomes Aug. 2020;3(1):263. https:\/\/doi.org\/10.1186\/s12955-020-01511-z.","journal-title":"Health Qual Life Outcomes Aug"},{"issue":"11","key":"2519_CR18","doi-asserted-by":"publisher","first-page":"881","DOI":"10.1016\/j.nmd.2019.09.003","volume":"29","author":"K de Valle","year":"2019","unstructured":"de Valle K, McGinley JL, Woodcock I, Ryan MM, Dobson F. Measurement properties and utility of performance-based outcome measures of physical functioning in individuals with facioscapulohumeral dystrophy - A systematic review and evidence synthesis. Neuromuscul Disord Nov. 2019;29(11):881\u201394. https:\/\/doi.org\/10.1016\/j.nmd.2019.09.003.","journal-title":"Neuromuscul Disord Nov"},{"key":"2519_CR19","doi-asserted-by":"crossref","unstructured":"Mokkink LBE, Terwee E. C. B. Conducting a review of patient-reported outcome measures. Vol. Version 2.0. 2024. https:\/\/www.cosmin.nl\/wp-content\/uploads\/COSMIN-manual-V2_final.pdf.","DOI":"10.1007\/s11136-024-03761-6"},{"issue":"11","key":"2519_CR20","doi-asserted-by":"publisher","first-page":"2929","DOI":"10.1007\/s11136-024-03761-6","volume":"33","author":"LB Mokkink","year":"2024","unstructured":"Mokkink LB, Elsman EBM, Terwee CB. COSMIN guideline for systematic reviews of patient-reported outcome measures version 2.0. Qual Life Res Nov. 2024;33(11):2929\u201339. https:\/\/doi.org\/10.1007\/s11136-024-03761-6.","journal-title":"Qual Life Res Nov"},{"issue":"8","key":"2519_CR21","doi-asserted-by":"publisher","first-page":"2029","DOI":"10.1007\/s11136-024-03634-y","volume":"33","author":"EBM Elsman","year":"2024","unstructured":"Elsman EBM, Mokkink LB, Terwee CB, et al. Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024. Qual Life Res Aug. 2024;33(8):2029\u201346. https:\/\/doi.org\/10.1007\/s11136-024-03634-y.","journal-title":"Qual Life Res Aug"},{"key":"2519_CR22","unstructured":"Carlton J, Powell PA, Frances SM, Williams C, Sutton A, Street J, Hewamadduma C. Capturing the Impact of Facioscapulohumeral Muscular Dystrophy (FSHD) on Health-related Quality of Life (HRQoL): a systematic review of the reliability and validity of existing self-report instruments using COSMIN. PROSPERO. https:\/\/www.crd.york.ac.uk\/PROSPERO\/view\/CRD42024605345."},{"issue":"8","key":"2519_CR23","doi-asserted-by":"publisher","first-page":"1115","DOI":"10.1007\/s11136-009-9528-5","volume":"18","author":"CB Terwee","year":"2009","unstructured":"Terwee CB, Jansma EP, Riphagen II, de Vet HC. Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Qual Life Res Oct. 2009;18(8):1115\u201323. https:\/\/doi.org\/10.1007\/s11136-009-9528-5.","journal-title":"Qual Life Res Oct"},{"key":"2519_CR24","doi-asserted-by":"publisher","first-page":"73","DOI":"10.1016\/j.jclinepi.2017.11.005","volume":"95","author":"A Chiarotto","year":"2018","unstructured":"Chiarotto A, Ostelo RW, Boers M, Terwee CB. A systematic review highlights the need to investigate the content validity of patient-reported outcome measures for physical functioning in patients with low back pain. J Clin Epidemiol Mar. 2018;95:73\u201393. https:\/\/doi.org\/10.1016\/j.jclinepi.2017.11.005.","journal-title":"J Clin Epidemiol Mar"},{"key":"2519_CR25","unstructured":"COSMIN. Guideline for systematic reviews of outcome measurement instruments. Accessed Last accessed 01.10.2025, https:\/\/www.cosmin.nl\/tools\/guideline-conducting-systematic-review-outcome-measures\/."},{"issue":"1","key":"2519_CR26","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1186\/s12955-022-01964-4","volume":"2","author":"J Carlton","year":"2022","unstructured":"Carlton J, Powell PA, Project HCG. Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN. Health Qual Life Outcomes Apr. 2022;2(1):57. https:\/\/doi.org\/10.1186\/s12955-022-01964-4.","journal-title":"Health Qual Life Outcomes Apr"},{"issue":"7650","key":"2519_CR27","doi-asserted-by":"publisher","first-page":"924","DOI":"10.1136\/bmj.39489.470347.AD","volume":"26","author":"GH Guyatt","year":"2008","unstructured":"Guyatt GH, Oxman AD, Vist GE, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ Apr. 2008;26(7650):924\u20136. https:\/\/doi.org\/10.1136\/bmj.39489.470347.AD.","journal-title":"BMJ Apr"},{"issue":"2","key":"2519_CR28","doi-asserted-by":"publisher","first-page":"e209549","DOI":"10.1212\/WNL.0000000000209549","volume":"23","author":"E McDool","year":"2024","unstructured":"McDool E, Carlton J, Powell PA, et al. Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis: A Systematic Review and Conceptual Framework. Neurology Jul. 2024;23(2):e209549. https:\/\/doi.org\/10.1212\/WNL.0000000000209549.","journal-title":"Neurology Jul"},{"issue":"15","key":"2519_CR29","doi-asserted-by":"publisher","first-page":"3462","DOI":"10.1080\/09638288.2023.2245749","volume":"46","author":"A Lizio","year":"2024","unstructured":"Lizio A, Greco L, Beretta M, et al. The upper extremity functional index (UEFI): Italian validation in patients with Facioscapulohumeral muscular dystrophy. Disabil Rehabil Jul. 2024;46(15):3462\u20138. https:\/\/doi.org\/10.1080\/09638288.2023.2245749.","journal-title":"Disabil Rehabil Jul"},{"key":"2519_CR30","doi-asserted-by":"publisher","first-page":"n71","DOI":"10.1136\/bmj.n71","volume":"29","author":"MJ Page","year":"2021","unstructured":"Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ Mar. 2021;29:372:n71. https:\/\/doi.org\/10.1136\/bmj.n71.","journal-title":"BMJ Mar"},{"issue":"1","key":"2519_CR31","doi-asserted-by":"publisher","first-page":"502","DOI":"10.1080\/13696998.2021.1907092","volume":"24","author":"SP McKenna","year":"2021","unstructured":"McKenna SP, Heaney A. Setting and maintaining standards for patient-reported outcome measures: can we rely on the COSMIN checklists? J Med Econ Jan-Dec. 2021;24(1):502\u201311. https:\/\/doi.org\/10.1080\/13696998.2021.1907092.","journal-title":"J Med Econ Jan-Dec"},{"issue":"4","key":"2519_CR32","doi-asserted-by":"publisher","first-page":"651","DOI":"10.1007\/s11136-011-9960-1","volume":"21","author":"CB Terwee","year":"2012","unstructured":"Terwee CB, Mokkink LB, Knol DL, Ostelo RW, Bouter LM, de Vet HC. Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual Life Res May. 2012;21(4):651\u20137. https:\/\/doi.org\/10.1007\/s11136-011-9960-1.","journal-title":"Qual Life Res May"},{"issue":"6","key":"2519_CR33","doi-asserted-by":"publisher","first-page":"1213","DOI":"10.1007\/s00125-021-05382-x","volume":"64","author":"J Carlton","year":"2021","unstructured":"Carlton J, Leaviss J, Pouwer F, et al. The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods. Diabetologia Jun. 2021;64(6):1213\u201325. https:\/\/doi.org\/10.1007\/s00125-021-05382-x.","journal-title":"Diabetologia Jun"},{"issue":"4","key":"2519_CR34","doi-asserted-by":"publisher","first-page":"422","DOI":"10.1002\/mus.27951","volume":"68","author":"A Varma","year":"2023","unstructured":"Varma A, Weinstein J, Seabury J, et al. The Facioscapulohumeral Muscular Dystrophy-Health Index: Development and evaluation of a disease-specific outcome measure. Muscle Nerve Oct. 2023;68(4):422\u201331. https:\/\/doi.org\/10.1002\/mus.27951.","journal-title":"Muscle Nerve Oct"},{"issue":"7","key":"2519_CR35","doi-asserted-by":"publisher","first-page":"2339","DOI":"10.1111\/ene.14863","volume":"28","author":"K Mul","year":"2021","unstructured":"Mul K, Hamadeh T, Horlings CGC, et al. The facioscapulohumeral muscular dystrophy Rasch-built overall disability scale (FSHD-RODS). Eur J Neurol Jul. 2021;28(7):2339\u201348. https:\/\/doi.org\/10.1111\/ene.14863.","journal-title":"Eur J Neurol Jul"},{"issue":"12","key":"2519_CR36","doi-asserted-by":"publisher","first-page":"1288","DOI":"10.1093\/ptj\/76.12.1288","volume":"76","author":"JM VanSwearingen","year":"1996","unstructured":"VanSwearingen JM, Brach JS. The Facial Disability Index: reliability and validity of a disability assessment instrument for disorders of the facial neuromuscular system. Phys Ther Dec. 1996;76(12):1288\u201398. https:\/\/doi.org\/10.1093\/ptj\/76.12.1288. discussion 1298\u2009\u2013\u2009300.","journal-title":"Phys Ther Dec"},{"issue":"5","key":"2519_CR37","doi-asserted-by":"publisher","first-page":"e200292","DOI":"10.1212\/NXG.0000000000200292","volume":"11","author":"CR Heatwole","year":"2025","unstructured":"Heatwole CR, Luebbe E, Hamel J, et al. Study of Testosterone and Recombinant Human Growth Hormone in Facioscapulohumeral Muscular Dystrophy. Neurol Genet Oct. 2025;11(5):e200292. https:\/\/doi.org\/10.1212\/NXG.0000000000200292.","journal-title":"Neurol Genet Oct"},{"issue":"8","key":"2519_CR38","doi-asserted-by":"publisher","first-page":"e70238","DOI":"10.1111\/ene.70238","volume":"32","author":"S Teeselink","year":"2025","unstructured":"Teeselink S, Vincenten SCC, Voermans NC, van Alfen N, van Engelen BGM, Mul K. The Facioscapulohumeral Muscular Dystrophy Rasch-Built Overall Disability Scale (FSHD-RODS): Longitudinal Assessment of a Disease-Specific Patient Reported Outcome. Eur J Neurol Aug. 2025;32(8):e70238. https:\/\/doi.org\/10.1111\/ene.70238.","journal-title":"Eur J Neurol Aug"}],"container-title":["Health and Quality of Life Outcomes"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/article\/10.1186\/s12955-026-02519-7","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12955-026-02519-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1186\/s12955-026-02519-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,19]],"date-time":"2026-05-19T16:18:16Z","timestamp":1779207496000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1186\/s12955-026-02519-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,26]]},"references-count":38,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["2519"],"URL":"https:\/\/doi.org\/10.1186\/s12955-026-02519-7","relation":{},"ISSN":["1477-7525"],"issn-type":[{"value":"1477-7525","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,26]]},"assertion":[{"value":"26 November 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 March 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"26 March 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"JC has received research funding from the Innovative Medicines Initiative, EuroQol, National Institute for Health and Care Research, Sanofi, KMC Healthcare, Duchenne UK, HCD Economics, Oxford University Innovation Ltd, Ferrer Internacional SA, Sensified LLC, uMed; carried out private consultancy projects for Euroqol; and serves as an Associate Editor for British and Irish Orthoptic Journal. PAP has received research funding from the Innovative Medicines Initiative, EuroQol Research Foundation, Sanofi, KMC Healthcare, Duchenne UK, HCD Economics, National Institute for Health and Care Research, Oxford University Innovation Ltd, Ferrer Internacional SA, Sensified LLC, BresMed Health Solutions Ltd, uMed; carried out private consultancy projects for Eli Lilly, IQVIA, and EuroQol Research Foundation. JS has received travel funding from the FSHD-Society & MD-UK. SF has no conflicts to declare. CW has no conflicts to declare. AS has no conflicts to declare. CH is Principal Investigator in FSHD phase 1 clinical trial FORTITUDE, and phase 3 FORTITUDE3, National Chief Investigator of MOVE\/MOVE+ FSHD natural history studies. He is a steering committee member of the European clinical trial network (outcome measures) group in FSHD and a key member of the FSHD_UK. CH has received advisory board and speaker honoraria from UCB (and research support), Roche, Biogen, Novartis, Argenx, Avidity and Lupin.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"72"}}