Last Chance to Join International Mito COVID-19 Data Study

Are you a mito patient and have had COVID-19? Your experience could help other mito patients. 

Join this important study by contacting Dr Chiara Pizzamiglio (This email address is being protected from spambots. You need JavaScript enabled to view it.) and Dr Robert Pitceathly (This email address is being protected from spambots. You need JavaScript enabled to view it.). 

Recruitment will finish by the end of March.

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. It is hoped that 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). The research team 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 COVID-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. From all countries in the world. 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 to 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 (This email address is being protected from spambots. You need JavaScript enabled to view it.) and Dr Robert Pitceathly (This email address is being protected from spambots. You need JavaScript enabled to view it.) and they 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 you will not be provided 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?

The research team hopes 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.

How do I find out more?

If you would like to know more about the study or would like to participate please contact Dr Chiara Pizzamiglio (This email address is being protected from spambots. You need JavaScript enabled to view it.) and Dr Robert Pitceathly (This email address is being protected from spambots. You need JavaScript enabled to view it.).


Rare Disease Day 2021 -poster

Watch the Rare Disease Day 2021 official video.

For more information, info pack, get involved, downloads, events worldwide, etc.: 

Picture of Coronavirus Vaccine

Mitochondrial Medicine Society's Response to COVID19 Vaccine

The following information has been published by MMS:


Patients with mitochondrial disease and families have many questions about the new COVID-19 vaccine(s), including whether to take it? Whether they should be prioritized? And its potential risks and benefits.

Although we know we are continuing to learn more about COVID-19, there is still much uncertainty about risks of COVID-19 infection in people with mitochondrial disease. At this time, there are still few reported children and adults with mitochondrial disease who have had COVID-19 infection based on worldwide registries. While some of the few reported to have had COVID-19 may have had significant problems, we do not have any evidence to believe or suspect that the frequency of poor outcome following COVID-19 infection is out of proportion to that in the general population.

The Food and Drug Administration (FDA) has now cleared two vaccines designed to lessen the risk of acquiring COVID-19: the BioNTech/Pfizer and the Moderna COVID-19 vaccinations for emergency use. 

Both are mRNA vaccines, a new type of vaccine to protect against infectious diseases. So far, European Medicines Agency (EMA) has approved the BioNTech/Pfizer and Moderna vaccines. This authorization follows a positive scientific recommendation based on a thorough assessment of the safety, effectiveness and quality of the vaccine by the European Medicines Agency and is endorsed by the Member States. The UK has also approved the Oxford/AstraZeneca vaccine which is an adenovirus vaccine. 

In Phase 3 trials, the BioNTech/Pfizer vaccine showed a 95% efficacy rate, 7 days after the second dose was given in people 16 years an older (94% effective in adults >65 years old). The Moderna vaccine showed a 94% efficacy rate, 14 days after the second dose is received, in people 18 years and older. These results were consistent across gender, age, race and ethnicity. The Oxford/AstraZeneca vaccine given to people 18 years and older, showed an efficacy of 70.4% after 2 standard doses of the vaccine given 28 days apart. 

At this time, vaccine availability is limited but it is hoped supplies will increase so that most of the global population can be vaccinated. The distribution of the vaccine in the US is being driven by recommendations put forth by the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices, with slight local changes put forth by individual states. The overall strategy is to offer the vaccines to health care professionals and residents in long- term care facilities in the first phase of vaccination. This will then be extended to people at risk and in later stages, to the rest of the population. The European Commission planned a centralized EU approach to secure equitable access to the vaccine across EU. Under its vaccines strategy, the Commission forged agreements with individual vaccine producers on behalf of EU countries. Once available, proven safe and effective, and authorized at EU level, all Member States will have access to COVID-19 vaccines at the same time and the distribution will be done on a per capita basis to ensure fair access. 

It is very important to remember that even with vaccines becoming available in the US and elsewhere, the best measures to prevent COVID-19 spread remain the current infection control procedures - Keep wearing your mask, wash your hands, avoid large gatherings, and remember social distancing and washing your hands. The vaccine is just another way of fighting the pandemic and DOES NOT replace these important safety measures. At this time it is not certain whether those vaccinated and immune to getting COVID-19 themselves can be vectors of COVID-19, meaning they may be able to spread the disease without acquiring it themselves. 

Read the full article.


The Journal of Inherited Metabolic Disease has recently started publishing scientific podcasts. Three of them covered mitochondrial disease. Worth listening to if you are interested in scientific developments.

The JIMD is the official journal of the Society for the Study of Inborn Errors of Metabolism, SSIEM.

It publishes results of original research and new or important observations pertaining to any aspect of inherited metabolic disease in humans and higher animals. This includes clinical, biochemical, genetic, experimental, methodological, theoretical, epidemiological, ethical and counselling aspects.

The JIMD also publishes reviews of important new developments or controversial issues relating to metabolic disorders.

For more information: 

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