Researchers working with The Lily Foundation have published the results of an international study that aims to increase understanding about the risks of COVID-19 in people with Primary Mitochondrial Diseases (PMDs).
The study, led by the NHS England Highly Specialised Services for Rare Mitochondrial Disorders in London and clinicians from around the world, involved analysing data from people with PMDs with a confirmed or suspected diagnosis of COVID-19, whose anonymised information had been entered into the International Neuromuscular COVID-19 database. Their findings have recently been published in Neurology.
Data was collected between 1st May 2020 and 31st May 2021, and gathered information from 79 patients with PMDs from 10 countries across the world. Of these 79 patients, 25 were hospitalised, 48 recovered fully, 28 improved with longer term side effects, and 3 sadly passed away. Researchers found that the most reported symptoms of COVID-19 were fever, fatigue, persistent cough, headache, myalgia (muscle pain), and loss of or changes to taste and/or smell.
The database also collected information concerning co-morbidities (other symptoms or complications that patients experience alongside their mitochondrial disease). Patients with respiratory dysfunction (weakness of the breathing muscles and/or other lung diseases), neurologic involvement (affecting the brain, nerves and spinal cord), four or more co-morbidities, or a severe PMD were most vulnerable to COVID-19. The risk of hospitalisation because of COVID-19 was higher in people with respiratory problems. Age, sex, ethnicity, or the type of PMD did not make a difference to an individual’s risk of being admitted to hospital.
Why this research is important
During the early stages of the COVID-19 pandemic, very little was known about the risks of COVID-19 in people with PMDs, so there was an urgent need to gather information to help inform the global mito community about the virus.
Although we now know a lot more about the virus, and new treatments and vaccines have been developed, the information collected by the study group will be very important in helping to inform the care of vulnerable people with PMD who may be infected by COVID-19 or other viruses in future.
Dr Robert Pitceathly, senior investigator for the study, said:
“The results of this research have enabled a better understanding of the risks factors associated with severe COVID-19, and helped guide treatment decisions in people with primary mitochondrial diseases (PMDs). Importantly, the study will inform the management of COVID-19, and potentially other viruses, in future. The research was made possible through close working with collaborators worldwide and partnerships with patient advocacy groups, such as the Lily Foundation.”
The Lily Foundation helped support recruitment to this study and are therefore very pleased that these results have been published. We would like to thank the patients who agreed to share their data anonymously and are very grateful for their contribution.
COVID-19 Related Outcomes in Primary Mitochondrial Diseases: An International Study. Chiara Pizzamiglio et al. Neurology.