Did people with rare diseases face a higher risk of dying from COVID-19?
In 283 Genomics England participants, rare disease was linked to higher COVID-19 death, especially neurological and neurodevelopmental conditions, though numbers were small.
The question
Common conditions are known risk factors for COVID-19 death, but the risk faced by people with rare diseases was largely unknown, partly because rare disease cohorts are small and poorly coded in large health records.
What we did
We used the Genomics England 100,000 Genomes project, which recruits people with rare diseases and their unaffected relatives. We looked at 283 participants who tested positive in the first wave of the pandemic in the UK, 158 with a rare disease and 125 unaffected relatives, and compared COVID-19-related death between them.
What we found
People with rare diseases had a higher risk of COVID-19-related death (odds ratio 3.47), although after adjusting for age and number of comorbidities the effect was no longer statistically significant (1.94). Neurology and neurodevelopmental diseases were significantly linked to death in both analyses (4.22 after adjustment).
Why it matters
The sample was small, so mediating factors cannot be ruled out. The authors wanted to raise awareness that people with rare diseases may be at higher risk, and that policies such as returning to the workplace should take them into account.