What is this study about?
The Highly Specialised Service for Rare Mitochondrial Disorders in London has created a database to register children and adults with mitochondrial disease who contract "Coronavirus Disease 2019" (COVID-19). The reason for doing this is to understand how COVID-19 affects people with mitochondrial disease, and whether the response is different to people without mitochondrial disease. We hope this knowledge will improve the treatment of COVID-19 in people with mitochondrial disease. Details concerning your mitochondrial disease and the symptoms and treatment received for COVID-19 are entered into the database, but no identifiable information is included (i.e., the data is anonymised). We might contact your mitochondrial specialist to confirm certain details surrounding your diagnosis and relevant medical professionals involved in your COVID-19 treatment. This is particularly relevant if you were admitted to hospital with COVD-19.
Who can take part?
The study is aimed at anyone (children or adults) with strongly suspected or genetically confirmed mitochondrial disease with either suspected or confirmed COVID-19. We would encourage the mitochondrial community to report all cases of COVID-19 irrespective of the symptoms and severity. This means people without symptoms, in whom COVID-19 was detected through routine screening, and those with typical (fever, cough and/or loss of smell/taste) or atypical symptoms would be included. We would also like to include both people who stayed at home and those that required admission to hospital. Finally, we would like to include people who had both a positive COVID-19 test (swab or blood test) and those with symptoms suggestive of COVID-19, even if they had a negative COVID-19 test.
What is involved in taking part?
The study will help us develop a database of individuals with mitochondrial diseases and confirmed or suspected COVID-19. The database is anonymous, so the name or any other personal details (for example, date of birth) will not be collected. To participate, please contact Dr Chiara Pizzamiglio ([email protected]) and Dr Robert Pitceathly ([email protected]) and we will contact you to obtain further information concerning your diagnosis and COVID-19 experience. The time required to obtain all the information is approximately 15-20 minutes. Please note that our team will not provide you with clinical advice on the management of COVID-19.
Are there any risks?
There are no risks in participating in the study.
Who will benefit?
We hope to understand how COVID-19 affects people with mitochondrial disease to improve knowledge of the course and improve management of the infection in people with mitochondrial disease.