Study finds increased COVID-19 mortality among adults with Down syndrome

Investigators found that adults with Down syndrome were roughly three times more likely to die from COVID-19 than the general population. This increased risk was especially apparent in from fifth decade of life: A 40-year-old with Down syndrome had a similar risk of dying from COVID-19 as someone 30 years older in the general population.

The study was published this week in The Lancet's EClinical Medicine.

"Our results, which are based on more than 1,000 COVID-19 unique patients with Down syndrome, show that individuals with Down syndrome often have more severe symptoms at hospitalization and experience high rates of lung complications associated with increased mortality," said Anke Huels, an assistant professor of epidemiology at Emory University's Rollins School of Public Health, and the study's first author. "These results have implications for preventive and clinical management of COVID-19 patients with Down syndrome and emphasize the need to prioritize individuals with Down syndrome for vaccination."

Down syndrome is a genetic condition typically caused by the trisomy -- or having an extra copy -- of chromosome 21. This extra copy changes how a baby's body and brain develop, which can cause both mental and physical challenges.

To collect data for the study, T21RS COVID-19 Initiative launched an international survey of clinicians and caregivers of individuals with Down syndrome infected with COVID-19 between April and October, 2020. Survey respondents were mainly from Europe, the United States, Latin America and India. (The survey was available in English, Spanish, French, Italian, Portuguese, German, Bengali, Hindi and Mandarin).

"We are delighted to see that, partly based on our findings, the CDC included Down syndrome in the list of 'high-risk medical conditions,' which will prioritize those with this genetic condition for vaccination," said co-author Alberto Costa, professor of pediatrics and psychiatry at the Case Western Reserve University School of Medicine. "Similar decisions have been made in the United Kingdom and Spain, and we hope that other countries will soon follow."

Costa is among the leaders of a large and diverse group of physicians and scientists from seven countries and more than a dozen institutions collaborating to study the impact of COVID-19 in people with Down syndrome, called the T21RS COVID-19 Initiative.

The T21RS COVID-19 Initiative is part of an effort established in March 2020 by the Trisomy 21 Research Society (T21RS) to gather and disseminate scientific information to support communities of individuals with Down syndrome and their families internationally during the pandemic. The T21RS was founded in 2014 and is the world's largest professional Down syndrome research society.

Costa is chair of the Clinical Research Committee of T21RS and one of the founding members of the T21RS COVID-19 Initiative. The other members of the T21RS COVID-19 Initiative leadership team are Huels and Stephanie Sherman, of Emory University, Andre Strydom, of King's College London, and Mara Dierssen, of the Barcelona Institute of Science and Technology.

Funding for the study was provided by: Down Syndrome Affiliates in Action, Down Syndrome Medical Interest Group-USA, GiGi's Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, Matthews Foundation, National Down Syndrome Society, National Task Group on Intellectual Disabilities and Dementia Practices. Costa received support from the Alana USA Foundation, the Infectious Diseases Society of America and the Cleveland-based Awakening Angels Foundation.