New Paper: Increased COVID-19 Mortality in Patients with Rare Diseases

Compared to common underlying conditions like diabetes, the risk of severe COVID-19 in people with rare diseases is very much understudied. This leads to limited evidence for informing care and management of these patients in the pandemic. IHI colleagues and collaborators conducted a study on the COVID-19 mortality rate in rare disease patients using Genomic England data.

The results showed that rare disease patients, especially ones affected by neurology and neurodevelopmental disorders, in the Genomics England cohort had increased risk of COVID-19 related death during the first wave of the pandemic in UK. The high risk is likely associated with rare diseases themselves. These results suggest that rare disease patients may face increased risk for COVID-19 related death. Proper considerations for rare disease patients should be taken when relevant policies (e.g., returning to workplace) are made.

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