Individuals with mitochondrial disease may be vulnerable to decline with infection. In collaboration with mitochondrial disease organizations, the NIH Metabolism, Infection and Immunity (MINI) Section is continuing to monitor the effects of the evolving COVID19 pandemic on individuals with mitochondrial disease.

To those who filled out the April survey, thank you. To those who are new to our latest survey, welcome. We invite patients and caregivers of individuals with mitochondrial disease to participate in our anonymous June survey. The results of this survey will help to inform providers on how to better serve the community during the pandemic and also help with future preparedness. In the future, we may ask you to complete the survey again as the COVID19 situation evolves.  

You are eligible to participate in this survey if you are older than 18 years of age and are a patient with mitochondrial disease or a caregiver of an individual with mitochondrial disease.

Responding to this survey takes approximately 15 minutes and is entirely voluntary. The survey is anonymous. Responses to the survey (or lack thereof) will have no bearing on your relationship with the NIH or mitochondrial disease organizations. The aggregate survey data will be presented at meetings and published.

Survey link: https://www.research.net/r/PALS_June

Thank you very much for your participation!

 

Eliza Gordon-Lipkin, MD

Peter J. McGuire, MD

Shannon Kruk, RN BSN

ministudy@mail.nih.gov

Phone: 301-451-9145

Lindsey Klingensmith

Executive Director

Public relation awesomeness.

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