{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T05:11:21Z","timestamp":1780549881012,"version":"3.54.1"},"reference-count":38,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2025,10,21]],"date-time":"2025-10-21T00:00:00Z","timestamp":1761004800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2025,10,21]],"date-time":"2025-10-21T00:00:00Z","timestamp":1761004800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"FSHD Canada"},{"DOI":"10.13039\/100012644","name":"Friends of FSH Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100012644","id-type":"DOI","asserted-by":"publisher"}]},{"name":"FSHD Society"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Neuromuscular Diseases"],"published-print":{"date-parts":[[2026,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Weakness associated with facioscapulohumeral muscular dystrophy (FSHD) impacts daily activities. Impact is often measured using standardized clinical assessments, documenting activity capacity, and only captures a snapshot of function. Wearable sensors may enable assessments of real-world activity performance.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To examine activity performance (actigraphy) and its relationship with capacity (clinical measures of strength and function) in adults with FSHD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Remote assessments were piloted in a subgroup from Motor Outcomes to Validate Evaluations in FSHD. Participants wore waist-worn activity monitors for 7 days. Activity metrics included moderate-to-vigorous intensity physical activity (MVPA), time in activity levels, and step counts. Descriptive statistics summarized activity, Mann Whitney U tests compared groups, and correlation analyses examined relationships between activity performance and capacity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Thirteen subjects wore the device for a median of 7 days. Most time was sedentary, with minimal vigorous activity. Participants spent a median of 23.1\u2005min daily (IQR: 23.8) and 161.7\u2005min weekly (IQR: 157.9) in MVPA. Median daily step count was 4245 (IQR: 2892), with a median maximum step count of 20 (IQR: 7) within a 10-second epoch. Correlations were found between total MVPA and 10mw\/r (\u03c1=\u22120.720, p\u2009=\u20090.006) and TUG-comfortable (\u03c1=\u22120.720, p\u2009=\u20090.006), and between maximum step count and several functional measures.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This pilot study provides insights into activity performance and its relationship with capacity in a small cohort of adults with FSHD. Total MVPA and maximum step count appear most informative for evaluating activity performance; larger studies are needed to confirm findings and assess psychometric properties of these metrics.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/22143602251389076","type":"journal-article","created":{"date-parts":[[2025,10,21]],"date-time":"2025-10-21T12:34:03Z","timestamp":1761050043000},"page":"355-361","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["A pilot study using actigraphy to examine activity performance and its relationship with activity capacity in adults with facioscapulohumeral muscular dystrophy"],"prefix":"10.1177","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-1181-6791","authenticated-orcid":false,"given":"Nicole T","family":"Koopman","sequence":"first","affiliation":[{"name":"University of Rochester Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna I","family":"Hamel","sequence":"additional","affiliation":[{"name":"University of Rochester Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1197-1657","authenticated-orcid":false,"given":"Michaela E","family":"Walker","sequence":"additional","affiliation":[{"name":"University of Kansas Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leann M","family":"Lewis","sequence":"additional","affiliation":[{"name":"University of Rochester Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0007-1525-6075","authenticated-orcid":false,"given":"Sandhya","family":"Sasidharan","sequence":"additional","affiliation":[{"name":"University of Kansas Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa J","family":"Currence","sequence":"additional","affiliation":[{"name":"University of Kansas Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1394-1494","authenticated-orcid":false,"given":"Rabi N","family":"Tawil","sequence":"additional","affiliation":[{"name":"University of Rochester Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeffrey M","family":"Statland","sequence":"additional","affiliation":[{"name":"University of Kansas Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4623-7014","authenticated-orcid":false,"given":"Katy J","family":"Eichinger","sequence":"additional","affiliation":[{"name":"University of Rochester Medical Center"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"MOVE Investigators of the Facioscapulohumeral Muscular Dystrophy Clinical Trial Research Network","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,10,21]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.0000000000001783"},{"key":"e_1_3_3_3_2","article-title":"Patient-Reported symptoms in facioscapulohumeral muscular dystrophy (PRISM-FSHD)","volume":"93","author":"Hamel J","year":"2019","unstructured":"Hamel J, Johnson N, Tawil R, et al. 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