COVID-19 initiative

  • COVID-19 and Down Syndrome on-line survey

    To make sure we have the best tools against the coronavirus and its effects on people with Down syndrome, the T21RS COVID-19 Initiative developed a new on-line survey. Even if you completed the last T21RS survey, please help by completing this one too.

    Who can complete the survey?

    • All people with Down syndrome, or their caregivers who can answer on their behalf.
    • It doesn’t matter whether or not the person with Down syndrome has had COVID-19 or has received the vaccine.

    How does the survey work?

    • It takes 30 minutes or less to complete the online survey
    • Responses cannot be linked back to you (anonymous)
    • Questions ask about the person with Down syndrome’s:
      1.  Health
      2. COVID-19 infections (if any)
      3. Vaccine response or side effects
      4. Impact of the pandemic on mental health

  • Please click on one of the following links in the language of your choice:

T21RS Statement with regards to vaccinations for people with Down syndrome during the COVID-19 pandemic

Read the statement

T21RS statement regarding COVID-19 booster vaccination for individuals with Down syndrome.

Read the statement

T21RS COVID SURVEY WORKGROUP

  • Robert Baloch, Ontario Tech University, Canada
  • Stefania Bargagna, Fondazione Stella Maris, Italy
  • Ana Brandão, Hospital Israelita Albert Einstein, Sao Paulo, Brazil
  • 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
  • Sujoy Ghosh, Calcutta University, India
  • Anke Huels, Emory University (Environmental health and epidemiology), USA
  • Monica Lakhanpaul, University College London and DSMIG-UK representative, UK
  • Yona Lunsky, University of Toronto, Canada
  • 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
  • Eitan Okun, Bar-Ilan University, Israel
  • Peter Olbrich, Hospital Universitario Virgen del Rocío, Seville, Spain
  • Maria del Carmen Ortega, Hospital 12 de Octubre, Spain
  • Susan Pereira Ribeiro, Emory University, USA
  • Anne Sophie Rebillat, Lejeune Institute and Co-Chair T21RS Science and Society Committee, France
  • Tilman Rohrer, Saarland University, Saarbrücken, Germany
  • Diego Ruiz de Asúa, Hospital Universitario de la Princesa, Madrid, Spain
  • Martina Sester, Saarland University, Saarbrücken, Germany
  • 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

Additional analysis support:

  • Dr Asaad Baksh, King’s College London, UK

Student members:

  • Patrick Feany, Emory University, USA
  • Lauren Russell, Emory University, USA

T21RS COVID IMPACT GROUP

T21RS is helping to co-ordinate research groups that are interested in examining the psycho-social impacts of the pandemic.

  • Andrew P. Allen, Trinity College Dublin, Ireland
  • Nicole Baumer, Harvard University and DSMIG representative, USA
  • Joanne Bell, Syneos Health, USA
  • Ruth Brown, Virginia Commonwealth University, USA
  • Angelo Carfì, Fondazione Policlinico Universitario A.Gemelli, Italy
  • Floriana Costanzo, Ospedale Pediatrico Bambino Gesu, Italy
  • Mara Dierssen, Center for Genomic Regulation and T21RS Past-President, Spain
  • Sujoy Ghosh, Calcutta University, India
  • Domingo González Lamuño, Hospital Universitario Marqués de Valdecilla, Spain
  • Matt Janicki, University of Illinois at Chicago; Co-Chair, National Task Group on Intellectual Disabilities and Dementia Practices
  • Monica Lakhanpaul, University College London and DSMIG-UK representative, UK
  • Yona Lunsky, University of Toronto, Canada
  • Mary McCarron, Trinity College Dublin, Ireland
  • Darren McCausland, Trinity College Dublin, Ireland
  • Stephanie Sherman, Emory University and Co-Chair T21RS Clinical committee, USA 
  • Andre Strydom, King’s College London and T21RS president, UK
  • Stefano Vicari, Ospedale Pediatrico Bambino Gesu, Italy

Student member:

  • Gema Milla De La Fuente, University College London, UK

T21RS COVID VACCINATION RESPONSE WORKGROUP

T21RS is supporting efforts to understand the antibody response after vaccination.

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