COVID -19

T21RS COVID-19 initiative

The outbreak of SARS-CoV-2, the virus that causes COVID-19, has been categorized as a pandemic by the World Health Organization. This virus may cause additional challenges for people who are already vulnerable and particularly those who struggle with existing health conditions. There is no evidence yet about how people with Down syndrome are affected by COVID-19, but given the potential risk T21RS made some initial recommendations.

However, to better understand the risk and to inform appropriate recommendations to protect individuals with DS against COVID-19, the T21RS has launched several initiatives and many of the T21RS members are now part of a T21RS COVID-19 Taskforce.

Our Clinical and Science & Society Committees have spearheaded the design and implementation of an international survey of COVID-19 in Down syndrome to be completed by carers and clinicians caring for individuals who have been diagnosed with COVID-19. The surveys are currently “live” in several countries and available in English, Spanish, French, Italian, and Portuguese. We will make our findings available at regular intervals to the entire Down syndrome community.

The survey is accompanied by an ongoing review of the relevant scientific and medical literature being undertaken by the T21RS Preclinical Committee. The goal is to better understand the potential roots of the susceptibility to viral respiratory infections in general for people with Down syndrome, and whether this vulnerability translates into a specific vulnerability to COVID-19.

 

 

At T21RS, we are committed to conducting and supporting research needed to understand the following issues:

  1. Whether individuals with Down syndrome are are more vulnerable to severe outcomes because of co-occurring conditions
  2. Whether those with Down syndrome are at an increased risk for complications arising in the context of SARS-CoV-2 infection
  3. Whether there are atypical responses to treatments of COVID-19 among individuals with Down syndrome, including their response to future vaccines.

LuMind IDSC’s Chief Scientific Officer, James Hendrix, PhD, interviewed the Trisomy 21 Research Society (T21RS) COVID-19 Task Force members

Watch the entire webcast interview to hear the purpose and global distribution of the survey plans from the T21RS COVID-19 Task Force members, as well as the preliminary takeaways and how they may be helpful to families and care providers as the pandemic evolves.

  • COVID-19 and Down Syndrome on-line survey

    If you care for a person with Down syndrome who is affected with COVID-19, you are invited to complete this survey. Or if you know of others who may be caring for such people, please pass along these links.

    The survey will take about 10-20 minutes to complete. It asks for: 1) general information about the person with DS, 2) their pre-existing conditions, 3) whether they were tested for COVID-19, 4) COVID-19 symptoms and 5) treatments and outcome.

  • If you are a carer/family member of a person with Down syndrome who tested positive or has signs or symptoms of COVID-19

  • If you are a clinician who has/is caring for a person with Down syndrome who tested positive or has signs or symptoms of COVID-19

Presentation of the initial results of the T21RS survey to the Italian community

Watch the video

Recomendations for the back of school of Down syndrome children during the COVID-19 outbreak developed by T21RS COVID19 Spanish workgroup  (only available in Spanish)

T21RS COVID SURVEY WORKGROUP

  • Stefania Bargagna, Fondazione Stella Maris, Italy
  • Nicole Baumer, Harvard University and DSMIG representative, USA
  • Angelo Carfì, Fondazione Policlinico Universitario A.Gemelli, Italy
  • Maria Carmona Iragui, Hospital de la Santa Creu i Sant Pau and Centro Médico Barcelona Down de la Fundación Catalana Síndrome de Down (FCSD)  and Co-Chair T21RS Science and Society Committee, Spain
  • Brian Chicoine, Advocate Medical Group Adult Down Syndrome Center, USA
  • Alberto Costa, Case Western Reserve University and Chair T21RS Clinical committee, USA
  • Mara Dierssen, Center for Genomic Regulation and T21RS Past-President, Spain
  • Jesus Florez, Fundación Iberoamericana DOWN 21, Spain
  • Anke Huels, Emory University (Environmental health and epidemiology), USA
  • Monica Lakhanpaul, University College London and DSMIG-UK representative, UK
  • Coral Manso, Down España, Spain
  • Miguel-Angel Mayer, Hospital del Mar. Instituto de Investigaciones Médicas (GRIB, IPSN), Spain
  • Andrew Nowalk, University of Pittsburgh (Infectious diseases), USA
  • Maria del Carmen Ortega, Hospital 12 de Octubre, Spain
  • Anne Sophie Rebillat, Lejeune Institute and Co-Chair T21RS Science and Society Committee, France
  • Diego Ruiz de Asúa, Hospital Universitario de la Princesa, Madrid, Spain
  • Guissy Sgandurra, Fondazione Stella Maris, Italy
  • Stephanie Sherman, Emory University and Co-Chair T21RS Clinical committee, USA
  • Andre Strydom, King’s College London and T21RS president, UK
  • Rafael de la Torre, Consorci MAR Parc de Salut de Barcelona, Instituto de Investigaciones Médicas IMIM, Spain
  • Diletta Valentini, Ospedale Pediatrico Bambino Gesu, Italy
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