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Among these reasons are funding, recruitment and availability of research studies being conducted.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We surveyed 228 parents of individuals with Down syndrome to understand their perceptions of research, study design, how they seek out information and topics they would like to see researched.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Parents with children 18\u2009years and younger responded to our survey. Parents indicated their willingness to participate in research (72%), yet few have (36%). Parents identified barriers to participation, research they feel would help their child, and interests in seeing new therapies and drug studies.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>These findings identify recommendations and insights from parents on future research agendas, studies and recruitment strategies that may help researchers improve outcomes for individuals with Down syndrome.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jar.12937","type":"journal-article","created":{"date-parts":[[2021,9,12]],"date-time":"2021-09-12T17:27:13Z","timestamp":1631467633000},"page":"179-187","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Parental perspectives on research for Down syndrome"],"prefix":"10.1111","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1099-1325","authenticated-orcid":false,"given":"Amanda Nicole","family":"White","sequence":"first","affiliation":[{"name":"Graduate School of Leadership and Change Antioch University  Yellow Springs Ohio USA"},{"name":"Cincinnati Children's Research Foundation Cincinnati Children's Hospital Medical Center  Cincinnati Ohio USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marly","family":"Chevette","sequence":"additional","affiliation":[{"name":"LuMind IDSC Foundation  Burlington Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hampus","family":"Hillerstrom","sequence":"additional","affiliation":[{"name":"LuMind IDSC Foundation  Burlington Massachusetts USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna","family":"Esbensen","sequence":"additional","affiliation":[{"name":"Department of Pediatrics University of Cincinnati College of Medicine  Cincinnati Ohio USA"},{"name":"Division of Developmental and Behavioral Pediatrics Cincinnati Children's Hospital Medical Center  Cincinnati Ohio USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2021,9,12]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732319833361"},{"key":"e_1_2_7_3_1","first-page":"356","volume-title":"Overcoming disabling barriers","author":"Barnes C.","year":"2006"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1352\/0047-6765(2004)42<471:RPWDAR>2.0.CO;2"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2004.09.026"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1300\/J013v31n02_08"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2589-7500(19)30136-0"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1744629515583417"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.17294\/2330-0698.1824"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.44.12.1526"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2788.2010.01256.x"},{"issue":"6","key":"e_1_2_7_12_1","first-page":"38","article-title":"The rewards of parent participation","volume":"62","author":"Comer J. 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