COVID-19 Vaccination of Individuals with Down Syndrome—Data from the Trisomy 21 Research Society Survey on Safety, Efficacy, and Factors Associated with the Decision to Be Vaccinated

Trisomy 21 Research Society COVID-19 Initiative

doi:10.3390/vaccines10040530

COVID-19 Vaccination of Individuals with Down Syndrome—Data from the Trisomy 21 Research Society Survey on Safety, Efficacy, and Factors Associated with the Decision to Be Vaccinated

Trisomy 21 Research Society COVID-19 Initiative

The Mina and Everard Goodman Faculty of Life Sciences - at Bar-Ilan University

Research output: Contribution to journal › Article › peer-review

8 Scopus citations

Abstract

Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS may help improve uptake of vaccination. The T21RS COVID-19 Initiative launched an international survey to obtain information on safety and efficacy of COVID-19 vaccines for individuals with DS. De-identified survey data collected between March and December 2021 were analyzed. Of 2172 individuals with DS, 1973 (91%) had received at least one vaccine dose (57% BNT162b2), 107 (5%) were unvaccinated by choice, and 92 (4%) were unvaccinated for other reasons. Most participants had either no side effects (54%) or mild ones such as pain at the injection site (29%), fatigue (12%), and fever (7%). Severe side effects occurred in <0.5% of participants. About 1% of the vaccinated individuals with DS contracted COVID-19 after vaccination, and all recovered. Individuals with DS who were unvaccinated by choice were more likely to be younger, previously recovered from COVID-19, and also unvaccinated against other recommended vaccines. COVID-19 vaccines have been shown to be safe for individuals with DS and effective in terms of resulting in minimal breakthrough infections and milder disease outcomes among fully vaccinated individuals with DS.

Original language	English
Article number	530
Number of pages	17
Journal	Vaccines
Volume	10
Issue number	4
DOIs	https://doi.org/10.3390/vaccines10040530
State	Published - 29 Mar 2022

Bibliographical note

Publisher Copyright:
© 2022 by the authors. Licensee MDPI, Basel, Switzerland.

Funding

Funding: 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. 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, DURSI2017SGR595, 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. Acknowledgments: The dissemination of the survey was supported by Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, The Matthew Foundation, National Down Syndrome Society (NDSS), the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), the Down Syndrome Resource Foundation, and the Canadian Down Syndrome Society. The updated vaccination survey (see Methods for details) and the current project were supported by the LuMind IDSC Foundation (financial support to AH and PTF). These and other international Down syndrome organizations are members of the T21RS COVID-19 stakeholders advisory group that provided advice to inform the design of the survey questions and interpretation of results, including the Global Down Syndrome Foundation (USA), DSA (UK), DSMIG (UK), DSMIG (USA), DSRF-UK, DSi, DSE international, Trisomie21-France, Down España, National Down Syndrome Congress (NDSC), Down Madrid, Fundació Catalana Síndrome de Down (Spain), EDSA, Royal College of Psychiatrists, CoorDown (Italy), Associazione Italiana Persone Down (AIPD; Italy), AFRT (France), Fundación Iberoamericana Down 21 (Spain), FIADOWN (Latin America),Federação Brasileira das Associações de Síndrome de Down (Brazil), and the European Down Syndrome Association. We acknowledge the contribution of DS-Connect® (The Down Syndrome Registry) which is supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIH for the dissemination of the T21RS survey. We also wish to thank the many families and clinicians who contributed to the survey.

Funders	Funder number
Alana USA Foundation
Awakening Angels Foundation
CIBER of Rare Diseases
Canadian Down Syndrome Society
Centro de Excelencia Severo Ochoa
DS-Connect
Down Syndrome Affiliates in Action
Down Syndrome Medical Interest Group-USA
Down Syndrome Registry
EDER	PT17/0009/0014, CEX2018-000782-M
Fondo de Investigaciones Sanitarias	PI19/00634
GenCat
HERCULES Center
IDSC Foundation
INB
Lejeune Foundation
Library Information Technology Services	UL1 TR000424
LuMind IDSC Foundation
MSIU
Matthew Foundation
NTG
National Task Group on Intellectual Disabilities and Dementia Practices
Ormond Street Hospital NHS Foundation Trust
Spanish National Bioinformatics Institute
National Institutes of Health
National Institute of Environmental Health Sciences	P30ES019776
National Down Syndrome Society
Infectious Diseases Society of America	DURSI2017SGR595
Down Syndrome Research Foundation
Eunice Kennedy Shriver National Institute of Child Health and Human Development
Horizon 2020 Framework Programme	848077, GO-DS21-848077
European Molecular Biology Laboratory
Ministerio de Ciencia, Innovación y Universidades
NIHR Biomedical Research Centre, Royal Marsden NHS Foundation Trust/Institute of Cancer Research
Centres de Recerca de Catalunya
Virginia Marine Resources Commission	MR/S011277/1, MR/S005145/1, MR/R024901/1
National Institute for Health and Care Research
European Commission
Fondation Jérôme Lejeune	2021a-2069
Generalitat de Catalunya	2017 SGR 00519
Agència de Gestió d'Ajuts Universitaris i de Recerca
Ministerio de Economía y Competitividad
Instituto de Salud Carlos III
Departament d'Universitats, Recerca i Societat de la Informació	2017SGR595
European Regional Development Fund
Agencia Estatal de Investigación	PID2019-110755RB-I00/AEI/10.13039/501100011033

Keywords

Ad26.COV2.S
BNT162b2
COVID-19
ChAdOx1 nCoV-19
Down syndrome
MRNA-1273
SARS-CoV-2
Trisomy 21
Vaccine hesitancy

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.3390/vaccines10040530

Cite this

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title = "COVID-19 Vaccination of Individuals with Down Syndrome—Data from the Trisomy 21 Research Society Survey on Safety, Efficacy, and Factors Associated with the Decision to Be Vaccinated",

abstract = "Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS may help improve uptake of vaccination. The T21RS COVID-19 Initiative launched an international survey to obtain information on safety and efficacy of COVID-19 vaccines for individuals with DS. De-identified survey data collected between March and December 2021 were analyzed. Of 2172 individuals with DS, 1973 (91%) had received at least one vaccine dose (57% BNT162b2), 107 (5%) were unvaccinated by choice, and 92 (4%) were unvaccinated for other reasons. Most participants had either no side effects (54%) or mild ones such as pain at the injection site (29%), fatigue (12%), and fever (7%). Severe side effects occurred in <0.5% of participants. About 1% of the vaccinated individuals with DS contracted COVID-19 after vaccination, and all recovered. Individuals with DS who were unvaccinated by choice were more likely to be younger, previously recovered from COVID-19, and also unvaccinated against other recommended vaccines. COVID-19 vaccines have been shown to be safe for individuals with DS and effective in terms of resulting in minimal breakthrough infections and milder disease outcomes among fully vaccinated individuals with DS.",

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COVID-19 Vaccination of Individuals with Down Syndrome—Data from the Trisomy 21 Research Society Survey on Safety, Efficacy, and Factors Associated with the Decision to Be Vaccinated

Abstract

Bibliographical note

Funding

Keywords

UN SDGs

Access to Document

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