To the Mitochondrial Disease Community:

Dear Patients and Families,
This is an anonymous survey which takes about 10-15 minutes to complete.  The objective of this survey is to understand the impact of the recent COVID19 pandemic on the mitochondrial disease community.  Thank you to all who have previously participated in this survey.  We ask you to respond to this survey again.  Responding to this survey at any time is entirely voluntary.  We may ask you to complete the same survey every 4-8 weeks 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.

This survey includes questions about your experience as a patient or caregiver affected by mitochondrial disease during the COVID19 pandemic. Furthermore, the survey will ask you about the type of mitochondrial disease the individual has and factors in their medical history that may increase the risk of, exposure to, or complications from COVID19. 

Aggregate survey data will be shared within the NIH and published. No individual data will be shared. Only the study team will have access to individual answers, without any identifiers. NIH (National Institutes of Health), UMDF (United Mitochondrial Disease Foundation), NAMDC (North American Mitochondrial Disease Consortium), PALS (People Against Leigh Disease) and RDCRN (Rare Disease Clinical Research Network) officials will not know whether or not you respond to the survey. Responses to the survey (or lack thereof) will have no bearing on your relationship with the NIH, UMDF, NAMDC, PALS, or RDCRN.
 
There are no right or wrong answers to these survey questions. All responses can be edited at any time prior to final submission.  If an area is "grayed out" simply click on it again and it will become active.  

If you should have questions or concerns about the study or survey, please contact our study team.

Dr Eliza Gordon-Lipkin
Dr Peter McGuire
Shannon Kruk, RN
Email: ministudy@mail.nih.gov
Phone:  301.451.9145.
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