I recently had the pleasure of interviewing the Trisomy 21 Research Society (T21RS) COVID-19 Task Force members who launched a study to evaluate the effects of virus on children and adults with Down syndrome around the world who tested positive or showed signs or symptoms. The goal of the survey is to learn if people with DS are more vulnerable or have a different course of illness related COVID-19 and if their illness is related to their pre-existing health profile.
After an initial 349 responses from caregivers of children and adults with DS, the task force has some preliminary takeaways about symptoms and who is at risk as they push for more data by expanding the survey’s reach.
Watch the webcast interview above 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.
With the financial and dissemination support of Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, Matthew Foundation, National Down Syndrome Society (NDSS), National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and the endorsement of many international Down syndrome organizations, T21RS continues to collect vital information to understand the risks and course of COVID-19 among people with Down syndrome (DS).
Please consider taking the survey if your loved one with Down syndrome tested positive or showed signs or symptoms or sharing it with someone who has.
We hope that this information will help identify who is at the greatest risk and how to better protect them. Thank you for helping us spread the word about this survey. Please stay safe and remember to wash your hands and wear a mask when you venture out.