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Anke Hüls, Email: anke.huels@emory.edu
A.H.: Planned the statistical analysis and was the major contributor in writing the manuscript. P.T.F. Conducted the data analysis and presentation. A.C.S.C., S.L.S., A.S. and S.I.Z.: Major contributions to writing the manuscript. S.B.: Contributed to the design of some questions in the survey, acquisition of data. N.T.B.: Contributed to design of the work, acquisition of data. A.C.B.: Led the survey in Brazil; translated the questionnaire into Portuguese; obtained official approval for the study in Brazil. M.D.: Led the survey in Spain; translated the questionnaire into Spanish; obtained official approval for the study in Spain; D.R.d.A.: contributed to patient recruitment and data acquisition in Spain; A.-S.R.: Led the survey in France; translated the questionnaire into French; obtained official approval for the study in France; B.A.C.: Participated in study design/modification; data collection. S.G.: Led and organized Indian survey on DS; coordinated among the researchers, clinicians, and DS families; obtained ethical clearance for the survey in India. G.S., M.L. and C.M.: Contributed to design of the work; acquisition of data. E.O.: Translated the survey to Hebrew; obtained ethical clearance for the survey in Israel. D.V. and A.C.: Led the survey in Italy; obtained official approval for the study in Italy; contributed to the design of some questions in the survey. R.B. and Y.L.: Led the survey in Canada; A.H., T.R.R. and J.L.: Led the survey in Germany. T.R.R.: Data entry in Germany. J.L.: obtained ethical clearance in Germany. S.L.S.: major contributor to the design, development, and implementation of the survey; data verification and interpretation. A.S.: involved in conception and design of the T21RS survey; and led the survey in the UK. All authors have read and agreed to the published version of the manuscript.
Johannes Levin reports speaker fees from Bayer Vital, Biogen, and Roche, consulting fees from Axon Neuroscience and Biogen, author fees from Thieme medical publishers and W. Kohlhammer GmbH medical publishers, non-financial support from Abbvie, and compensation for duty as part-time CMO from MODAG, outside the submitted work. Andre Strydom is the president of the T21RS and reports consultancies and participation on advisory boards for AC Immune, Aelis Farma, and ProMIS neuroscience; investigator on industry-sponsored trials (Roche, GW phamaceuticals). The other authors have nothing to declare.
This work is supported by grants from: Down Syndrome Affiliates in Action, Down Syndrome Medical Interest Group-USA, GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, The Matthew Foundation, National Down Syndrome Society, National Task Group on Intellectual Disabilities and Dementia Practices. AH is supported by the HERCULES Center (NIEHS P30ES019776). AH and PTF are supported by the LuMind IDSC Foundation. The REDCap survey and database management system at Emory University was supported by Library Information Technology Services grant support (UL1 TR000424). ACSC is supported by the Alana USA Foundation, Awakening Angels Foundation, and the Infectious Diseases Society of America (IDSA). MD is supported by the Centre for Genomic Regulation Severo Ochoa excellence grant, the CIBER of Rare Diseases, DURSI 2017SGR595, and acknowledges support of the Agencia Estatal de Investigación (PID2019-110755RB-I00/AEI/10.13039/501100011033), the Spanish Ministry of Science, Innovation and Universities (MSIU) to the EMBL partnership, the Centro de Excelencia Severo Ochoa and CERCA (GenCat). AS is supported by the MRC (MR/S011277/1; MR/S005145/1; MR/R024901/1), Lumind IDSC, The Lejeune Foundation and the European Commission (H2020 SC1 Gene overdosage and comorbidities during the early lifetime in Down Syndrome GO-DS21-848077). ML was supported by the National Institute for Health Research (NIHR) Biomedical Research Centre based at UCL Great Ormond Street Institute of Child Health/Great Ormond Street Hospital NHS Foundation Trust. The Research Programme on Biomedical Informatics (GRIB) is a member of the Spanish National Bioinformatics Institute (INB), funded by ISCIII and EDER (PT17/0009/0014). The DCEXS is a “Unidad de Excelencia María de Maeztu”, funded by the AEI (CEX2018-000782-M). The GRIB is also supported by the Agència de Gestió d’Ajuts Universitaris i de Recerca (AGAUR), Generalitat de Catalunya (2017 SGR 00519). DRA was supported by the Fondo de Investigaciones Sanitarias (grant PI19/00634, from the Ministerio de Economía y Competitividad (Instituto de Salud Carlos III) and co-funded by The European Regional Development Fund (ERDF) “A way to make Europe”) and the Fondation Jérôme Lejeune (grant no. 2021a-2069). The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of manuscript.
© 2022 by the authors.