mitoSHARE: UMDF’s Patient-Driven Registry
Who should register?
Through mitoSHARE, we aim to identify and characterize as many patients as possible – both adults and minors – anywhere in the world. You do not have to have a confirmed diagnosis of mitochondrial disease in order to join the registry, as we know many patients in our community face a long diagnostic journey. We also encourage guardians and caregivers to join and share their perspective.
Who should register?
Through mitoSHARE, we aim to identify and characterize as many patients as possible- both adults and minors- anywhere in the world. You do not have to have a confirmed diagnosis of mitochondrial disease in order to join the registry, as we know many patients in our community face a long diagnostic journey. We also encourage guardians and caregivers to join and share their perspective.
Enrollment & Expectations
Resources
Useful information to help you navigate mitoSHARE
mitoSHARE: How to Get Started
Download PDF →
mitoSHARE FAQ
Technical Support
Q: What do I do if I forgot my password?
Q: What are my options if I don’t have a cell phone?
Q: I live outside of the USA. Can I register for mitoSHARE?
Q: I am an international mitoSHARE participant; can I upload my Electronic Health Record from outside the United States?
Q: How do I log into mitoSHARE?
Accounts
Q: Can a Minor create an account for themselves?
Q: Can I create a Caregiver and Patient account at the same time?
Q: Can I create an account on behalf of my deceased loved one?
Q: Can I share all my data with my clinician(s)?
Q: How can I sever the connection between my mitoSHARE account and my clinician(s)?
Q: Can I share a portion of my data with health care providers?
Q: How can I sever a provider connection in the Sharing Center?
Data & Security
Q: Do I have to confirm Terms of Use at account creation?
Q: Do I have to confirm consent at account creation?
Q: Can I revoke my consent and/or delete my account?
Q: What kind of data can I share on Matrix?
Q: How do I download my data?
Q: Who sees the Health Records I share?
Q: How will you protect the privacy of my medical information?