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      Medical vulnerability of individuals with down syndrome to severe COVID-19 – data from the trisomy 21 research society and the UK ISARIC4C survey

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          Abstract

          Background

          Health conditions, immune dysfunction, and premature aging associated with trisomy 21 (Down syndrome, DS) may impact the clinical course of COVID-19.

          Methods

          The T21RS COVID-19 Initiative launched an international survey for clinicians or caregivers on patients with COVID-19 and DS. Data collected between April and October 2020 (N=1046) were analysed and compared with the UK ISARIC4C survey of hospitalized COVID-19 patients with and without DS.

          Findings

          The mean age of COVID-19 patients with DS in the T21RS survey was 29 years (SD = 18). Similar to the general population, the most frequent signs and symptoms of COVID-19 were fever, cough, and shortness of breath. Joint/muscle pain and vomiting or nausea were less frequent ( p < 0.01), whereas altered consciousness/confusion were more frequent ( p < 0.01). Risk factors for hospitalization and mortality were similar to the general population with the addition of congenital heart defects as a risk factor for hospitalization. Mortality rates showed a rapid increase from age 40 and were higher in patients with DS (T21RS DS versus non-DS patients: risk ratio (RR) = 3.5 (95%-CI=2.6;4.4), ISARIC4C DS versus non-DS patients: RR = 2.9 (95%-CI=2.1;3.8)) even after adjusting for known risk factors for COVID-19 mortality.

          Interpretation

          Leading signs/symptoms of COVID-19 and risk factors for severe disease course are similar to the general population. However, individuals with DS present significantly higher rates of medical complications and mortality, especially from age 40.

          Funding

          Down Syndrome Affiliates in Action, DSMIG-USA, GiGi's Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, The Matthew Foundation, NDSS, National Task Group on Intellectual Disabilities and Dementia Practices.

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          Most cited references39

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          Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

          Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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            The REDCap consortium: Building an international community of software platform partners

            The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.
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              Presenting Characteristics, Comorbidities, and Outcomes Among 5700 Patients Hospitalized With COVID-19 in the New York City Area

              There is limited information describing the presenting characteristics and outcomes of US patients requiring hospitalization for coronavirus disease 2019 (COVID-19).
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                Author and article information

                Journal
                EClinicalMedicine
                EClinicalMedicine
                EClinicalMedicine
                The Author(s). Published by Elsevier Ltd.
                2589-5370
                22 February 2021
                22 February 2021
                : 100769
                Affiliations
                [a ]Department of Epidemiology and Gangarosa Department of Environmental Health, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
                [b ]Departments of Pediatrics and of Psychiatry, School of Medicine, Case Western Reserve University, Cleveland, Ohio, USA
                [c ]Centre for Genomic Regulation (CRG), The Barcelona Institute of Science and Technology, Barcelona, Spain
                [d ]Universitat Pompeu Fabra (UPF), Barcelona, Spain
                [e ]Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER), Spain
                [f ]Institute of Psychiatry, Psychology, and Neuroscience, Department of Forensic and Neurodevelopmental Sciences, King's College London, London, United Kingdom
                [g ]The London Down Syndrome (LonDownS) Consortium, London, United Kingdom
                [h ]Fondazione Stella Maris IRCCS, Pisa, Italy
                [i ]Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
                [j ]Hospital Israelita Albert Einstein, Sao Paulo, SP, Brazil
                [k ]Policlinico Universitario Agostino Gemelli IRCCS, Rome, Italy
                [l ]Sant Pau Memory Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau, Biomedical Research Institute Sant Pau, Universitat Autònoma de Barcelona, Barcelona, Spain
                [m ]Barcelona Down Medical Center, Fundació Catalana de Síndrome de Down, Barcelona, Spain
                [n ]Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL, USA
                [o ]Cytogenetics and Genomics Reserach Unit. Department of Zoology, University of Calcutta.Kolkata. West Bengal, India
                [p ]UCL- Great Ormond Street Institute of Child Health, London, United Kingdom
                [q ]Whttington NHS Trust, London, United Kingdom; Down Syndrome Medical Interest Group, London, United Kingdom
                [r ]CM: DOWN ESPAÑA, Madrid, Spain
                [s ]Research Programme on Biomedical Informatics (GRIB), Hospital del Mar Medical Research Institute and DCEXS Universitat Pompeu Fabra, Barcelona, Spain
                [t ]Department of Psychiatry, Research Institute i+12. Hospital Universitario 12 de Octubre. Madrid, Spain
                [u ]Department of Internal Medicine and Instituto de Investigación Biomédica-La Princesa, Hospital Universitario de La Princesa, Madrid, Spain
                [v ]Institut Jérôme Lejeune, Paris, France
                [w ]Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
                [x ]Department of Developmental Neuroscience, IRCCS Fondazione Stella Maris, Pisa, Italy
                [y ]Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
                [z ]Pediatric Unit, Bambino Gesù Children's Hospital, IRCCS, Rome, Italy
                [aa ]Department of Human Genetics, School of Medicine, Emory University, Atlanta, Georgia, USA
                [bb ]Institute of Psychiatry, Psychology, and Neuroscience, Department of Forensic and Neurodevelopmental Sciences, King's College London, London, United Kingdom
                [cc ]The London Down Syndrome (LonDownS) Consortium, London, United Kingdom
                [dd ]South London and the Maudsley NHS Foundation Trust
                Author notes
                [* ]Corresponding author.
                [#]

                equal contribution.

                Article
                S2589-5370(21)00049-3 100769
                10.1016/j.eclinm.2021.100769
                7897934
                33644721
                06f8bd9d-51ce-4d18-9105-dd2cfc31bed7
                © 2021 The Author(s)

                Since January 2020 Elsevier has created a COVID-19 resource centre with free information in English and Mandarin on the novel coronavirus COVID-19. The COVID-19 resource centre is hosted on Elsevier Connect, the company's public news and information website. Elsevier hereby grants permission to make all its COVID-19-related research that is available on the COVID-19 resource centre - including this research content - immediately available in PubMed Central and other publicly funded repositories, such as the WHO COVID database with rights for unrestricted research re-use and analyses in any form or by any means with acknowledgement of the original source. These permissions are granted for free by Elsevier for as long as the COVID-19 resource centre remains active.

                History
                : 14 December 2020
                : 5 February 2021
                : 5 February 2021
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