COVID-19 publications and resources

COVID-19 Publications

T21RS and its members have published several research studies to highlight the risk and impact of COVID-19 in individuals with Down syndrome. Here is a list of current publications:

  • Medical vulnerability of individuals with Down syndrome during the first wave – survey results. Link
  • T21RS statement on “shielding” or confinement of individuals with Down syndrome during the COVID-19 pandemic.  Link
  • Review of Susceptibility to COVID-19 in adults with Down syndrome. Link
  • Immune dysregulation and respiratory tract infections in adults with Down syndrome. Link
  • Editorial highlighting impact of poor care. Link
  • Editorial highlighting protective factors. Link
  • Comparison of COVID-19 and non-COVID-19 pneumonia in people with Down syndrome. Link
  • COVID-19 in children with Down syndrome. Link
  • COVID-19 Vaccination of Individuals with Down Syndrome—Safety and Efficacy. Link
  • Comment on data from people with Down syndrome concerning risk prediction following vaccination. Link

 

Our work has also been featured in the media:

 

Archived material:

  • LuMind IDSC’s Chief Scientific Officer, James Hendrix, PhD, interviewed the Trisomy 21 Research Society (T21RS) COVID-19 Task Force members. Link
  • T21RS Statement with regards to vaccinations for people with Down syndrome during the COVID-19 pandemic.  Link
  • T21RS statement regarding COVID-19 booster vaccination for individuals with Down syndrome. Link

Webinars for families and clinicians

We have been working with Down syndrome organizations across the world to help advocate for vaccination prioritization based on the scientific evidence, including the results of T21RS surveys, that suggest that adults with Down syndrome should to be considered as a risk population for COVID-19. Together, we have co-hosted several webinars to highlight the unique risks associated with COVID-19 in people with Down syndrome

Research survey resources

The T21RS initiative has led efforts to develop tools to establish the psychosocial impact on individuals with Down syndrome and their families. Here is a list of questionnaires; research groups can email us (info@t21rs.org) if they want to implement any of these studies or questionnaires in their areas.

  • Epidemic – Pandemic Impacts Inventory (EPII)—modified for Down syndrome (N. Baumer)
  • Survey on the impact of COVID-19 pandemic and lockdown on children under 11 years old who have Down Syndrome (M. Lakhanpaul)
  • Cognitive change module – this module can be used alongside the adapted EPII to obtain information from caregivers about cognitive changes during the pandemic in older people with Down syndrome (A. Strydom)
  • Down syndrome and COVID-19 (S. Sherman)

Survey of individuals with Down syndrome – Down España has developed a survey to seek the views of individuals with Down syndrome on the impacts of the pandemic. Other organisations that are interested in implementing this survey could contact Coral Manso salud@sindromedown.net