{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T17:36:47Z","timestamp":1791394607051,"version":"4.3.3"},"reference-count":53,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2021,12,13]],"date-time":"2021-12-13T00:00:00Z","timestamp":1639353600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Research Intellect Disabil"],"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Despite work on the self\u2010identities of people with intellectual disabilities, research has yet to describe the self\u2010perceptions of people with Prader\u2010Willi syndrome (PWS). The perspectives of those with PWS are also important for rapidly evolving clinical trials aimed at treating symptoms of PWS.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Twenty\u2010one young people with PWS were administered a semi\u2010structured interview that assessed how they perceive their syndrome and clinical trials. Transcribed interviews were reliably coded using content\u2010driven, applied thematic analyses.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Five themes emerged: struggles with chronic hunger and food\u2010seeking that impede goals and relationships; struggles with anxiety and outbursts, schedule changes and school; distancing from PWS; needs for clinical trials that cure PWS, reduce hunger or anxiety, and lead to improved outcomes; and needs for advocacy and awareness of PWS.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Findings shed new light on the self\u2010perceptions of those with PWS and have important implications for current interventions and future clinical trials.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.12950","type":"journal-article","created":{"date-parts":[[2021,12,14]],"date-time":"2021-12-14T05:57:53Z","timestamp":1639461473000},"page":"460-470","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["\u2018The cure for us is a lot of things\u2019: How young people with <scp>Prader\u2010Willi<\/scp> syndrome view themselves and future clinical trials"],"prefix":"10.1111","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9188-538X","authenticated-orcid":false,"given":"Elisabeth M.","family":"Dykens","sequence":"first","affiliation":[{"name":"Department of Psychology and Human Development, Vanderbilt Kennedy Center Vanderbilt University  Nashville Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Roof","sequence":"additional","affiliation":[{"name":"Department of Psychology and Human Development, Vanderbilt Kennedy Center Vanderbilt University  Nashville Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hailee","family":"Hunt\u2010Hawkins","sequence":"additional","affiliation":[{"name":"Department of Psychology and Human Development, Vanderbilt Kennedy Center Vanderbilt University  Nashville Tennessee USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,12,13]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.appet.2016.06.021"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2929.2005.02200.x"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12088"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1468-3148.2004.00218.x"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/09687599.2011.529662"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1080\/09687590903363340"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_7_9_1","volume-title":"Unstuck and on target! 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