{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,18]],"date-time":"2026-07-18T00:57:06Z","timestamp":1784336226810,"version":"3.55.0"},"reference-count":19,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2023,1,19]],"date-time":"2023-01-19T00:00:00Z","timestamp":1674086400000},"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":[[2023,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Down syndrome is the most common liveborn genetic condition. However, there are no surveys measuring societal services and supports for people with Down syndrome. We developed a questionnaire so that initiatives could be targeted towards countries most in need of assistance.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>We formed a geographically diverse group of physicians, family members of people with Down syndrome, and members of Down syndrome not\u2010for\u2010profit organisations to create a survey of societal services and supports. We used a modified Delphi method and disseminated the survey to Down syndrome non\u2010profit organisations worldwide.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Our survey consists of 61 items categorised within five domains: Education, Community Inclusion, Independence, Healthcare, and Social and Policy Issues.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>We developed a survey to measure societal services and supports available to people with Down syndrome as perceived by organisational leaders. Our methods might serve as a blueprint for other populations of people with intellectual and developmental disabilities.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.13071","type":"journal-article","created":{"date-parts":[[2023,1,19]],"date-time":"2023-01-19T08:40:02Z","timestamp":1674117602000},"page":"497-506","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Designing an international survey for organisations serving people with Down syndrome"],"prefix":"10.1111","volume":"36","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7591-6222","authenticated-orcid":false,"given":"Daniel J.","family":"Kats","sequence":"first","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"School of Medicine Case Western Reserve University  Cleveland Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5232-9882","authenticated-orcid":false,"given":"Brian G.","family":"Skotko","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4990-5711","authenticated-orcid":false,"given":"Gert","family":"de Graaf","sequence":"additional","affiliation":[{"name":"Dutch Down Syndrome Foundation  Meppel The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1466-759X","authenticated-orcid":false,"given":"Ellen","family":"Skladzien","sequence":"additional","affiliation":[{"name":"Down Syndrome Australia  North Melbourne Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian Takashi","family":"Hooper","sequence":"additional","affiliation":[{"name":"Acceptions  Tokyo Japan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rose","family":"Mordi","sequence":"additional","affiliation":[{"name":"Down Syndrome Foundation Nigeria  Lagos Nigeria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tetiana","family":"Mykhailenko","sequence":"additional","affiliation":[{"name":"Ukrainian Down Syndrome Organization  Kyiv Ukraine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frank","family":"Buckley","sequence":"additional","affiliation":[{"name":"Down Syndrome Education International  Cumbria UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vasiliki","family":"Patsiogiannis","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kavita","family":"Krell","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelsey","family":"Haugen","sequence":"additional","affiliation":[{"name":"Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen","family":"Donelan","sequence":"additional","affiliation":[{"name":"Heller School for Social Policy and Management Brandeis University  Waltham Massachusetts USA"},{"name":"Health Policy Research Center, The Mongan Institute Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Medicine, Harvard Medical School Harvard University  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,1,19]]},"reference":[{"key":"e_1_2_10_2_1","volume-title":"Gazing into the Oracle: The Delphi method and its application to social policy and public health","author":"Adler M.","year":"1996"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12691"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.5093\/pi2019a17"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0197394"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2019.103208"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_10_8_1","unstructured":"Human Services Research Institute & The National Association of State Directors of Developmental Disabilities Services. 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