A large-scale study of over 58 million people in England has identified eight rare diseases that greatly increase the risk of death from COVID-19, even in fully vaccinated individuals.
This research highlights the urgent need to include rare diseases in public health strategies, vaccination policies, and future pandemic planning.
The study, published in The Lancet Digital Health, was conducted by researchers from University College London (UCL) and the University of Glasgow.
Their findings emphasize the long-standing challenges faced by people with rare diseases, who have often been overlooked in medical research and public health decisions.
Rare diseases affect a small percentage of the population, making them difficult to study due to limited data.
As a result, people with these conditions often struggle to receive appropriate treatment and support. During the COVID-19 pandemic, this issue became even more evident.
In the UK, the government’s shielding list—which identified people at high risk and advised them to stay at home—mostly excluded rare diseases. This left many vulnerable individuals unprotected and without the extra precautions given to other high-risk groups.
To address this gap, researchers used electronic health records (EHRs) to analyze the impact of COVID-19 on people with rare diseases.
Their study revealed that individuals with rare diseases were nearly five times more likely to die from COVID-19 than the general population. Among the eight rare diseases linked to the highest risk, infertility disorders and kidney diseases were the most dangerous.
Studying rare diseases is difficult because diagnosis can take years, leaving many cases undocumented. The study also spanned two different “waves” of the COVID-19 pandemic, making it challenging to separate the effects of different virus variants and overlapping symptoms from other conditions.
Despite these challenges, the research took advantage of the UK’s unique healthcare system, which maintains detailed, population-wide electronic health records. This allowed the scientists to uncover significant health inequalities, including how some rare diseases disproportionately affect certain ethnic groups.
This is the first study to analyze such a large number of rare diseases and their impact on COVID-19 outcomes. It provides crucial new insights into the risks faced by people with rare conditions, a group that has historically been neglected in health policy and research.
For those living with rare diseases, the challenges extend far beyond COVID-19. Many face long, frustrating waits for diagnosis, frequent medical appointments, and ongoing struggles to manage their health.
This study not only highlights the increased risks they face but also demonstrates how linking health records can provide better information for doctors and policymakers.
Professor Honghan Wu, co-author of the study, stressed the importance of using NHS data to improve healthcare for rare disease patients. “Early detection means earlier intervention and better treatment and support,” he said.
“Research that links electronic health records has enormous potential to improve care and public health decisions—not just for COVID-19, but for many other neglected patient populations.”
These findings make a strong case for better integration of rare diseases into healthcare planning. As the world prepares for future pandemics, policymakers must ensure that rare disease patients are not left behind.
More research is needed to understand how to protect this vulnerable group, but this study marks an important step toward recognizing their unique risks and healthcare needs.
If you care about COVID, please read studies about vitamin D deficiency linked to severe COVID-19, death, and how diets could help manage post-COVID syndrome.
For more health information, please see recent studies about COVID infection and vaccination linked to heart disease, and results showing extracts from two wild plants can inhibit COVID-19 virus.
The research findings can be found in The Lancet Digital Health.
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