Commonly Asked Questions
What will be expected of me if I participate?
Participants will be asked to:
- Provide a sample of blood, if possible.
- Adult (18 years of age and older): 26.5 milliliters, or mL (about 3 tablespoons), of blood in four tubes.
- Adolescent (13 to 17 years of age): 16.5 mL (about 2 tablespoons) of blood in three tubes.
- Pediatric (birth through age 12): 6 mL (about 1 tablespoon) of blood in two tubes.
- Provide researchers access to clinical tissue samples or postmortem tissue, if available. Often individuals with a known or suspected mitochondrial disease have residual clinical samples (such as skin or muscle biopsy, urine) stored for additional testing. If these samples are no longer needed and remain available, they can be located and collected for this study.
- Complete a short questionnaire about themselves and their family. This questionnaire will ask the participant's age, sex, and known or suspected mitochondrial disorder. It will also ask a few questions about family members' health. This will take less than five minutes to complete.
- Allow the Mitochondrial Disease Biobank access to medical records. Once participants agree, researchers can review their medical records now and in the future to gather medical information needed for research. Looking at health records allows researchers to learn information that might be helpful during specific studies. Participants will not be informed if researchers look at their medical records.
In the future, participants of the study may also be asked to:
- Complete additional questionnaires. We may occasionally send additional questionnaires to participants at home. They will take less than five minutes to complete. It's up to participants if they wish to complete and return them. Biobank staff will not contact participants more than twice a year (and it's generally less often than that). Such contact does not mean that anything has been learned about a participant's health.
- Provide additional blood samples. We may ask participants for additional samples in order to study changes in blood over time, or because we used up the first sample provided. If we ask for another sample, participants may always say no.
How long will Mayo Clinic use the Mitochondrial Disease Biobank?
Participants will be in the study for several years, as samples donated to the Mitochondrial Disease Biobank serve as a research community resource until they are used up. By participating, individuals are agreeing to be a part of ongoing mitochondrial disease research. Participants have a right to leave the Mitochondrial Disease Biobank project at any time.
Is there a cost to participants?
Participants do not need to pay for tests and procedures that are done just for this research study, including blood draw. However, participants or their health plan will need to pay for all other tests and procedures that they would normally have as part of their regular clinical care. Participants will not be paid for taking part in this study.
How are samples and information stored?
None of the samples in the Mitochondrial Disease Biobank are stored with names, addresses, clinic numbers, birth dates or Social Security numbers on them. Instead, samples are assigned a unique code. No one knows which sample is a particular participant's just by looking at the label. Only certain members of the Mitochondrial Disease Biobank staff and Biospecimen Trust Oversight Group can determine what participant goes with what sample. For example:
How do researchers access participants' information?
The Mitochondrial Disease Biobank allows researchers access to the biobank samples only after a strict application and review process. Researchers are then provided with anonymous tissue sample(s) and some medical information (such as clinical symptoms, age, sex and diagnosis) linked to that sample, but Mayo does not provide a name, address, phone number, Social Security number or any other identifying information.
How do I enroll?
Visit the Enrollment page.