{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,22]],"date-time":"2026-07-22T16:47:27Z","timestamp":1784738847919,"version":"3.55.0"},"reference-count":15,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,12,21]],"date-time":"2022-12-21T00:00:00Z","timestamp":1671580800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["R01AG073179"],"award-info":[{"award-number":["R01AG073179"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["J intellect Disabil Res"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Historically, individuals with Down syndrome have been excluded from clinical research. Our objective was to assess the degree of interest adults with Down syndrome have in participating in research from the perspective of the caregivers who care for them.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We conducted an online survey of <jats:italic>N<\/jats:italic>\u00a0=\u00a0390 caregivers of adults with Down syndrome and asked about interest in research participation and demographics.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Caregivers were mostly family members, older than 55\u00a0years, and White. Caregivers reported that the adult with Down syndrome that they cared for would be more comfortable participating in research that was physiological, such as research involving fit bits (70.2% would participate), exercise (63.3%) or diet apps (53.9%), whereas they would be less likely to participate in clinical trials involving more invasive procedures such as injections (10.9%) and laboratory exams like MRIs (32.0%). We found little difference by age or gender of the adult with Down syndrome or by caregiver education level.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Our survey identified high interest for less invasive studies, illustrating acceptability of observational and lifestyle studies. More effort may be needed to understand fear and barriers to participation and to create tools and methods to increase interest in more invasive studies.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jir.12999","type":"journal-article","created":{"date-parts":[[2022,12,22]],"date-time":"2022-12-22T03:43:50Z","timestamp":1671680630000},"page":"352-361","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Caregivers' perception of adults with Down syndrome willingness to participate in research"],"prefix":"10.1111","volume":"67","author":[{"given":"N.","family":"Kyprianou","sequence":"first","affiliation":[{"name":"Department of Epidemiology Boston University School of Public Health  Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Hendrix","sequence":"additional","affiliation":[{"name":"LuMind IDSC  Burlington MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"H.","family":"Hillerstrom","sequence":"additional","affiliation":[{"name":"LuMind IDSC  Burlington MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R.","family":"Grimm","sequence":"additional","affiliation":[{"name":"National Down Syndrome Society  Washington DC USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.\u2010M.","family":"Kirova","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Boston University School of Public Health  Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9146-4497","authenticated-orcid":false,"given":"E.","family":"Rubenstein","sequence":"additional","affiliation":[{"name":"Department of Epidemiology Boston University School of Public Health  Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,12,21]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s11689-022-09435-z"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2004.tb00483.x"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1177\/1757913914552583"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2022.00520"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0247141"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(21)00245-3"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/jppi.12048"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.3390\/vaccines10040530"},{"key":"e_1_2_8_10_1","unstructured":"INCLUDE Project|National Institutes of Health (NIH). (2022). Available at:https:\/\/www.nih.gov\/include-project(retrieved March 27 2022)"},{"key":"e_1_2_8_11_1","first-page":"125","article-title":"Down Syndrome: Current Status, Challenges and Future Perspectives","volume":"5","author":"Kazemi M.","year":"2016","journal-title":"International Journal of Molecular and Cellular Medicine"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-1616"},{"key":"e_1_2_8_13_1","article-title":"Healthcare and Behavior Changes for Adults With Down Syndrome 1\u2010Year into COVID\u201019","author":"Rubenstein E.","year":"2020","journal-title":"AJIDD"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2016.03.023"},{"key":"e_1_2_8_15_1","first-page":"175","article-title":"Addressing vaccine hesitancy: Clinical guidance for primary care physicians working with parents","volume":"65","author":"Shen S. C.","year":"2019","journal-title":"Canadian family physician Medecin de famille canadien"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/jar.12937"}],"container-title":["Journal of Intellectual Disability Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jir.12999","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jir.12999","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jir.12999","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,18]],"date-time":"2023-08-18T05:04:13Z","timestamp":1692335053000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jir.12999"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12,21]]},"references-count":15,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,4]]}},"alternative-id":["10.1111\/jir.12999"],"URL":"https:\/\/doi.org\/10.1111\/jir.12999","archive":["Portico"],"relation":{},"ISSN":["0964-2633","1365-2788"],"issn-type":[{"value":"0964-2633","type":"print"},{"value":"1365-2788","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,12,21]]},"assertion":[{"value":"2022-06-08","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-30","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-12-21","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}