mitoSHARE: UMDF’s Patient-Driven Registry

mitoShare

mitoSHARE is a worldwide patient-populated registry initiative stewarded by UMDF. The goal of the registry is to advance scientific research using data gathered from patients and families affected by mitochondrial disease. With every new registry participant, we gain a better understanding of the disease, which in turn facilitates diagnoses, treatments and cures, and improved standards of clinical care.

mitoSHARE is now open for registrations. Follow one of the links below to join the registry!

MYSELF

An adult (18 years and older)
that can manage their own account

A MINOR

An account created on behalf of a minor (17 years and under)

AN ADULT

An account created on behalf of an adult (18 years and older)

DECEASED

An account created on behalf of a deceased patient (Future Feature)

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.

Patient participation is critical.

mitoSHARE

Confidentially and securely sharing your information with patient registries like mitoSHARE helps achieve the mission of discovering treatments and cures for mitochondrial disease. Participation in mitoSHARE is an important role of community engagement from patients and families.

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

UMDF has partnered with LunaDNA to create mitoSHARE. When you enroll in mitoSHARE, you have the ability to upload your health (Electronic Health Records) and genomic data (genetic testing files). As we continue to build the mitoSHARE Registry, you will have the opportunity to participate in surveys and studies on a range of topics such as demographics, barriers to care, natural history, and clinical trials. You have complete control over your data and how much you choose to share. To the extent you are comfortable, we strongly encourage sharing to help researchers and clinicians better understand mitochondrial disease.

Resources

Useful information to help you navigate mitoSHARE

mitoSHARE: How to Get Started

A step-by-step guide to getting started with mitoSHARE. Download PDF →

mitoSHARE FAQ

Technical Support

Q: What do I do if I forgot my password?

A: Select “Forgot your password” on the log in screen. Enter the e-mail associated with your account and LunaDNA Technical Support will send you instructions via e-mail to reset your password.

Q: What are my options if I don’t have a cell phone?

You will need a cell phone that can receive text messages to complete your account creation. If you do not have cell phone, you can set up a Google Voice number to send texts to your e-mail. To sign up for a free Google Voice number, go to https://voice.google.com/u/0/about.

Q: How do I delete my account?

A: Log in to your account at member.lunadna.com. Go to your Settings page (select Settings from the drop-down menu under the colored circle in the top right of your dashboard). Select “Delete Account” from the left-side menu. Select “Delete Account”.

You will be asked if you are certain you want to delete your account, once more. Once you select Yes, all patient portal connections will be disconnected and all data in your account will be deleted. Please allow 24 hours for this process to complete.

Q: I live outside of the USA. Can I register for mitoSHARE?

A: Yes.  mitoSHARE is an international database of mitochondrial disease patients and caregivers.

Q: I am an international mitoSHARE participant; can I upload my Electronic Health Record from outside the United States?

A: Unfortunately, LunaDNA does not support international EHR portals at this time. We will keep you apprised if this change.

Accounts

Q: What is the difference between “Myself” versus “An Adult”?

A: “Myself” accounts are for adults (18 years and over) who are able to manage their own account, whereas “An Adult” account is an account created by a caregiver on behalf of adults (18 years and over) who is unable to manage their own account under “Myself”.

Q: Can a Minor create an account for themselves?

A: No. A guardian/caregiver will create and be in charge of a minor’s (17 years and under) account. All data shared on behalf of a minor will be uploaded by the legal guardian/caregiver. All registry updates and news, affecting the minor’s account, will be communicated via e-mail with the legal guardian/caregiver in charge of said minor’s account.

Data & Security

Q: Do I have to confirm consent at account creation?

A: No, you have the right to not consent at the time of account creation. However, this will halt the registry sign-up process. You cannot view and/or participate in any registry activity until you confirm consent to participate in the registry research efforts. You can download the full consent and read it in full here.  If you have any questions in regards to the consent please contact the mitoSHARE Registry Coordinator at registry@umdf.org.

Q: Can I revoke my consent?

A: Yes, you can revoke your consent at any time. To do so you must go into Settings (select Settings from the drop-down menu under the colored circle in the top right of your dashboard).  Scroll down until you see the Consent box and select the Revoke Consent. 

 

Please know if you revoke your consent, LunaDNA will delete your data from the platform to ensure it can no longer be used for research.

Q: What kind of data can I share with mitoSHARE?

A: To stay up to date with the data you can upload on mitoSHARE, click here.

Q: How is data I share in mitoSHARE used for research?

A: Any data you share in mitoSHARE is de-identified, encrypted, and added to LunaDNA’s secure database to support health discovery.  Your de-identified data is combined (aggregated) with data from other members prior to research use. This helps to ensure that your data is secure and your privacy is protected.

Q: Who sees the Health Records I share?

A: You are the only person who can see your individual health records. As with all data shared on LunaDNA, the only way researchers may access your data is in a de-identified, aggregated (combined with the data of other members) way.

General

Q: How can I participate in studies?

A: All studies and surveys will be presented on the mitoSHARE member’s dashboard. The mitoSHARE Registry Coordinator will also keep you apprised of any new study opportunities through email if you have enabled Contact Information Access in your Privacy Settings.

“Since being diagnosed 20 years ago, I’ve participated in many acts of service to help the mitochondrial disease community.  If I had to choose only ONE ACT, it would be to enroll in this registry. It is that important. This registry equals treatments and a cure.”

Sharon M. Shaw

Mitochondrial Disease Patient & Advocate

“Patient registries provide the foundation for the design and successful completion of clinical trials. A registry is a ‘must-have’ for drug development programs.”

Matt Klein, MD

PTC Therapeutics

“Patients often don’t realize that they are the most important educators for their physicians and health care team. They can best teach us about their symptoms, how they evolve and what makes them feel better or worse. A patient registry enables us to better serve our patients and their families as well as engage interested researchers to pursue studies to find that cure.”

Amel Karaa, MD

Massachusetts General Hospital

Questions?

Contact our mitoSHARE Registry Coordinator at registry@umdf.org