The Trisomy 21 Research Society (T21RS) is collecting vital information to understand the risks and course of COVID-19 among people with Down syndrome. The goal is to learn if people with Down syndrome are more vulnerable or have a different course of illness related to COVID-19 and if their illness is related to their pre-existing health profile.

We hope that this information will help identify who is at the greatest risk and how to better protect them.

You are invited to complete this survey about the person with Down syndrome for whom you provide care and has tested positive or has symptoms of COVID-19. Completion of this survey is your choice.


None of the survey data will be linked to you or the person with Down syndrome. In other words, it will be anonymous. 

The survey will take about 10-20 minutes to complete.

It asks for:

  1. general information about the person with Down syndrome,
  2. their pre-existing conditions,
  3. whether they were tested for COVID-19,
  4. COVID-19 symptoms and
  5. treatments and outcome.

The study has undergone ethics review at the data coordinating centre in the US (Emory university), and also been registered with King's College London (MRA-19/20-18484). In addition, it has also been reviewed by the HRA, which has confirmed that it does not require NRES review, HRA or local level R&D if legitimate members of the care team would be processing the confidential patient information, and anonymising it to complete professionals’ survey responses.