The Down’s Syndrome Association in the UK has been involved in an international study looking at the effects of COVID-19 in people who have Down’s syndrome.

This has been an extremely important study, pulled together very quickly because 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, which looked at the international experiences of people with Down’s syndrome in the period March to June 2020, has now been analysed.

The Key messages from the study are:

  1. Monitor for the same symptoms as in the general population, plus nasal symptoms in younger people with Down’s syndrome
  2. Particularly protect those people with Down’s syndrome over age 40, as the risk for fatality seems to be more common in middle-aged individuals
  3. Younger individuals (people with Down’s syndrome below 20 years) do not often present with severe complications from COVID-19.

Julian Hallett from Down’s Syndrome Association said “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 any underlying health conditions they may have, we would encourage all families and support staff to make sure any concerns are addressed by an individual’s GP or other relevant health professional.

The initial findings may give some reassurance that the experience (and likely recovery from) COVID-19 is pretty similar to the general population. We know that, in the general population, older people are more likely to experience more significant illness from the virus, but for people who have Down’s syndrome, this seems to be for adults aged 40 and over, so extra vigilance is important.”

The researchers are still actively collecting data and so if anyone you know of who has Down’s syndrome has been directly affected by the virus, please complete the online surveys here.

A summary of the findings from the survey can be read here.

The DSA welcomes calls from anyone wishing to know more on 0333 12 12 300 or email Julian.hallett@downs-syndrome.org.uk.