Acute Infection (Including COVID-19 Infection) in Mitochondrial Disease
An Observational Prospective Natural History Study of Metabolism, Infection and Immunity During the COVID19 Pandemic (At-home Participation)
Why are we doing this study?
Coronavirus 2019 (COVID-19) is a serious public health problem and the implications of COVID19 in individuals with mitochondrial disease or their family members is unknown. Individuals with mitochondrial disease may be particularly at risk for decline associated with infection. The goal of this study is to compare biomarkers like genetic differences in individuals with mitochondrial disease who may be infected with COVID-19. Our goal is to understand how these markers may influence symptoms. We hope that we can use this information to help develop therapies to reduce the severity of infection in people with mitochondrial disease.
Who can join?
Anyone with mitochondrial disease may be eligible to join, regardless of COVID-19 infection status. We will use the clinical information, questionnaire responses and samples of people with mitochondrial disease for our main analyses. We may also enroll family members of the person with mitochondrial disease as controls or for other analyses related to genetics and COVID-19.
People in this study will:
- Provide a blood sample
- Fill out several health questionnaires either by phone, paper or online
- Undergo a history and physical exam via telemedicine or video conferencing
- Be contacted to share health and/or symptom updates with us after joining the study.
Privacy and confidentiality are very important to us. All information shared with us will be coded. We will not return individual genetic results. We may contact you after your illness to get updates on your health and you may be asked to provide additional blood samples or complete additional questionnaires if your health status changes.
We intend for our study to help better understand the interaction between infections and mitochondrial disease. If you are interested, please contact us at firstname.lastname@example.org or Shannon Kruk, Research Nurse and study coordinator, at 301-451-9145.
Last updated: February 2, 2021