cf919aaefcd2b32c002f045254fd11e7 pmc_8942061.pdf 40dcd154b5e03a2f8cd10c33f494b689e53ae688 pmc_8942061.pdf 802d68b4d5fa133201887fbb59a429c97fda7f9a57084ae8b756476ba5d13132 pmc_8942061.pdf Title: Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group Subject: Journal of Neurodevelopmental Disorders, https://doi.org/10.1186/s11689-022-09435-z Keywords: Down syndrome;Intellectual disability;Clinical trials;Clinical research;Research engagement;Recruitment Author: Nicole T. Baumer Creator: Adobe InDesign 15.0 (Windows) Producer: Adobe PDF Library 15.0; modified using iText® 5.3.5 ©2000-2012 1T3XT BVBA (SPRINGER SBM; licensed version) CreationDate: Tue Mar 22 08:56:55 2022 CET ModDate: Wed Mar 23 17:49:55 2022 CET Tagged: no UserProperties: no Suspects: no Form: none JavaScript: no Pages: 9 Encrypted: no Page size: 595.276 x 790.866 pts Page rot: 0 File size: 960967 bytes Optimized: no PDF version: 1.4 name type encoding emb sub uni object ID ------------------------------------ ----------------- ---------------- --- --- --- --------- MyriadPro-Regular Type 1C Custom yes no yes 34 0 MyriadPro-Bold Type 1C WinAnsi yes no yes 95 0 MyriadPro-It Type 1C Custom yes no yes 36 0 MyriadPro-Semibold Type 1C Custom yes no yes 38 0 MyriadPro-Light Type 1C Custom yes no yes 54 0 WarnockPro-Regular Type 1C Custom yes no yes 35 0 MyriadPro-SemiboldIt Type 1C Custom yes no yes 37 0 MyriadPro-Regular2 Type 1C WinAnsi yes no yes 238 0 WarnockPro-Light Type 1C Custom yes no yes 96 0 MyriadPro-Regular3 Type 1C WinAnsi yes no yes 213 0 FFTZFY+OpenSans-Light Type 1C Custom yes yes no 220 0 FFTZFY+OpenSans-Extrabold Type 1C WinAnsi yes yes no 216 0 FFTZFY+OregonLDOBookSinistral Type 1C WinAnsi yes yes no 226 0 FFTZFY+OpenSans-Bold Type 1C WinAnsi yes yes no 223 0 Jhove (Rel. 1.22.1, 2019-04-17) Date: 2022-05-20 02:23:55 CEST RepresentationInformation: pmc_8942061.pdf ReportingModule: PDF-hul, Rel. 1.12.1 (2019-04-17) LastModified: 2022-03-28 07:35:12 CEST Size: 960967 Format: PDF Version: 1.4 Status: Well-Formed and valid SignatureMatches: PDF-hul MIMEtype: application/pdf PDFMetadata: Objects: 374 FreeObjects: 1 IncrementalUpdates: 0 DocumentCatalog: ViewerPreferences: HideToolbar: false HideMenubar: false HideWindowUI: false FitWindow: false CenterWindow: false DisplayDocTitle: false NonFullScreenPageMode: UseNone Direction: L2R ViewArea: CropBox ViewClip: CropBox PrintArea: CropBox PageClip: CropBox PageLayout: SinglePage PageMode: UseOutlines Language: en-US Outlines: Item: Title: Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group Children: Item: Title: Abstract Item: Title: Backgroundintroduction Children: Item: Title: Current state of clinical trials in the Down syndrome population Item: Title: Challenges and barriers for conducting clinical trials Children: Item: Title: Barriers faced by families Item: Title: Ethical and logistical barriers faced by researchers Item: Title: Challenges specific to clinical trials targeting cognition Item: Title: Clinical trials readiness working group objectives Item: Title: Recruitment and retention: strategies to promote engagement and inclusion Children: Item: Title: Engagement with individuals with DS, their familiescare partners, and community advocacy organizations Item: Title: Collaboration between researchers, clinicians, stakeholder groups, and advocacy organizations Item: Title: Engagement of underrepresented groups Item: Title: Providing accessible information Item: Title: Reducing study burden Item: Title: Legal and ethical considerations Item: Title: Cohort development across the lifespan Item: Title: Building an investigator pipeline in Down syndrome research Item: Title: Discussionkey points Item: Title: Conclusions Item: Title: Acknowledgements Item: Title: References Info: Title: Conducting clinical trials in persons with Down syndrome: summary from the NIH INCLUDE Down syndrome clinical trials readiness working group Author: Nicole T. 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Baumer Mara L. Becker George T. Capone Kathleen Egan Juan Fortea Benjamin L. Handen Elizabeth Head James E. Hendrix Ruth Y. Litovsky Andre Strydom Ignacio E. Tapia Michael S. Rafii 10.1186/s11689-022-09435-z 2010-04-23 true springer.com springerlink.com https://doi.org/10.1186/s11689-022-09435-z 10.1186/s11689-022-09435-z 1866-1955 journal Journal of Neurodevelopmental Disorders The Author(s) 2010-04-23 true 10.1186/s11689-022-09435-z noindex springer.com springerlink.com uuid:536642db-faf6-4984-aef6-58322e5493c1 uuid:b9b44026-e683-4575-bea8-b9bce4b80402 default 1 converted uuid:536642db-faf6-4984-aef6-58322e5493c1 converted to PDF/A-2b pdfToolbox 2022-03-22T10:37:15Z 2 B Michael S. 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