Covid-19 and Down’s syndrome T21RS Survey, report 27 May 2020

The Down’s Syndrome Association is involved in an international study looking at the effects of COVID-19 in people who have Down’s syndrome. This is an extremely important study, since COVID-19 is a ‘novel’ virus, unknown to the medical community until the beginning of this year. As yet, we knew very little about how severely affected individuals who have Down’s syndrome might be if they were infected with COVID-19. The study has collated data from across the globe, with the majority of responses coming from Europe, including the UK.

The first set of data has now been analysed. Thank you to all the families and clinicians in the UK who have completed the online questionnaires. Whilst we are aware that children and adults who have Down’s syndrome will differ in terms of underlying health conditions they may have, the initial findings give some reassurance that the experience (and likely recovery from) COVID-19 is pretty similar to the general population, save for an age effect. We know that, in the general population, older people are more likely to experience more significant illness from the virus and for people who have Down’s syndrome, this seems to be for adults aged 40 and over.

The Key messages from the study are :

  1. Monitor for the same symptoms as in the general population, plus nasal symptoms in younger patients with Down syndrome
  2. Protect those over age 40: risk for fatality more common in middle-aged individuals
  3. Younger individuals ( below 20 years) do not often present with severe disease
  4. More survey data are needed to confirm these conclusion

The researchers are still actively collecting data and so if anyone you know of who has Down’s syndrome that has been directly affected by the virus, please complete the online surveys here: https://www.ds-int.org/blog/down-syndrome-covid-19-survey

If you would like to discuss any of the issues the results of survey raises, do call our Helpline on 0333 12 12 300 for an opportunity to talk to one of our Information Officers.