Why is the National Institutes of Health (NIH) doing this study?
The goal of the study is to learn more about the role of viral infection and biomarkers of immunity in mitochondrial disease during the COVID19 pandemic.
This study can be performed entirely from home. NIH is utilizing new technology via Neoteryx ™ fingerstick at-home sampling.
With these samples they will look for antibodies indicating exposure to viral infection. The home environment is an important area where exposure to infection is often shared. Therefore, they also invite household members of patients with mitochondrial disease to participate.
Who can join?
Children with confirmed mitochondrial disease and their family members residing in the home. Active infection or illness is *not* an eligibility requirement.
What is involved?
People in this study will complete:
1. Telephone interview to review consent documents and obtain a short health history
2. Blood sampling via a fingerstick with the Neoteryx ™ blood sampling kit. NIH will send all supplies and pay for all shipping. Video of the blood collection can be found here.
3. Online Questionnaires, which takes about 10-15 minutes to complete
4. Telehealth History and Physical for some participants
Privacy and confidentiality are very important. All information is coded and online platforms utilize HIPPA compliant security.
NIH expects the study to help better understand the interaction between viral exposure, infection, and mitochondrial disease. More information can be found at www.genome.gov/MINI.
If you are interested in participating, please contact firstname.lastname@example.org or Shannon Kruk at 301-451-9145.