There is much fear and anxiety within the Down syndrome community as to how Covid-19 may affect our family members with Down syndrome. Downs Syndrome Research Foundation UK and Positive About Down Syndrome have collaborated to try to reach as many UK based families to collect data to establish some baseline findings:
How many people with DS in the UK have had a confirmed case of Covid19 and how many suspected?
How has it affected those people, what treatment did they require and how did they respond?
Is it possible many are not showing symptoms, much like neuro-typical children/adults?
This will provide us with an overview, with the potential to further investigate and share findings. We have a closed Facebook page that is strictly for those in the UK, who presently have a family member who has confirmed/suspected Covid19. Please only request to join if you fit this criteria. https://www.facebook.com/groups/212112863448994/
Who should complete this survey?
A parent/carer for EVERY person with Down syndrome resident in the UK to complete, please complete survey once only. We are interested to establish what underlying medical conditions, if any, the person has; what symptoms, if any, they have shown since the beginning of the year and what treatment they have received. As you may know, many people have had Covid-19 with little or no symptoms, so we will ask about all possible symptoms and situations that would have increased the chance of your family member having caught Covid-19.
Many thanks for your support,
Dr Liz Corcoran & Nicola Enoch
DSRF UK Positive About Down Syndrome
T21 Research Society International Survey
“The T21 RS are collecting survey information to understand the risks and course of COVID-19 among people with Down syndrome (DS) for people around the world. You are invited to complete this survey about the person with DS for whom you provide care if they have tested positive or have/ have had symptoms of COVID-19. Completion of this survey is your choice.
Once you complete the survey, you can decide if you want to forward a new survey link to clinician who is caring for the affected person to get additional information. If you agree, an automated email will be sent to you and will explain the study to the doctor who cares for the person with DS. It will provide a link to a “Clinician Survey”. You just need to forward that email. Again, everything will remain anonymous.
Link to survey: https://redcap.emory.edu/surveys/?s=98DMP3CCN8
We aim to release results every 2 weeks starting from the week of 20th of April to ensure that the information can be available to families and clinicians as it becomes available.
Many thanks for your help with this,