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.
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 opportunity for the patient community to provide their perspective and share their mitochondrial disease journey.
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 Across Healthcare to create mitoSHARE on the Matrix platform. 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.
Q: What do I do if I forgot my password?
A: Select “Forgot your password” on the log in screen. Enter the email associated with your account and click “Send verification code”. You will receive a verification code to change your password.
Q: What are my options if I don’t have a cell phone?
A: You do not need a cell phone number to create an account. Any phone number, whether that be a cell phone or landline, can be used at account creation. Note, if you use a landline or 555-555-5555 instead of a cell phone number, messages and reminders from your patient and/or caregiver Matrix account will not be issued. For example, to take advantage of the medicine reminder feature of the platform, you will need a cell phone number that can receive text messages.
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. It is primarily in English, so all English-speaking patients and caregivers can participate in mitoSHARE’s registry activities.
Q: I am an international mitoSHARE participant; can I upload my Electronic Health Record from outside the United States?
A: Unfortunately, only U.S.-based mitoSHARE participants will be able to connect to their Electronic Health Record at this time. As a mitoSHARE patient and/or caregiver, you will be notified when Matrix expands this capability to an international level.
Q: How do I log into mitoSHARE?
Q: Can a Minor create an account for themselves?
A: No. A caregiver will create and manage a minor’s (younger than the age of majority) 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 email with the caregiver in charge of said minor’s account.
Q: Can I create a Caregiver and Patient account at the same time?
A: At account creation, caregivers have the capability to create patient account(s). To create a Patient account, you will need the patients First Name, Last Name, and Date of Birth.
Q: Can I create an account on behalf of my deceased loved one?
A: Yes, you can create an account on behalf of a deceased loved one.
Q: Can I share all my data with my clinician(s)?
A: Yes, you can share your data with as many clinicians as you like. To share your data with your clinician(s) indefinitely, select the clinician(s) you are currently seeing for your mitochondrial disease care from the dropdown list in the General Information section. Once you have selected your clinician(s), they will have access to all your data, including surveys you have completed and records you have uploaded. Currently, we only have the Mitochondrial Care Network (MCN) Clinicians available for selection. If you do not see your clinician(s) in our set list, please notify the Registry Coordinator at email@example.com to assist you in adding your clinician(s). If a clinician is not part of mitoSHARE, they will be asked to create a clinician account on the Matrix platform, before being able to access patient data.
Q: How can I sever the connection between my mitoSHARE account and my clinician(s)?
A: You can remove a clinician association(s) from your account at any time. If you want to remove your clinician(s) from viewing your data, go to General Information section in the left-hand side of the navigation menu and click “x” next to the clinician you would like to remove.
Q: Can I share a portion of my data with health care providers?
A: Yes, you can share a portion of your data with any provider. As the account holder (caregiver and/or patient), you can generate a unique link to share your data with a provider for a set time period. You can share your data by going to the Share Center in the navigation menu on the left-hand of your screen, select Create in the top left corner. The types of data you can share with your health care provider are Medicine and Supplements, Symptoms, Activities, General Information, and Documents. Note: Survey data cannot be shared using this method.
Q: How can I sever a provider connection in the Sharing Center?
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 firstname.lastname@example.org.
Q: Can I revoke my consent and/or delete my account?
A: Yes. You can revoke your consent at any time. In order to revoke your consent, and therefore request your account be deleted and/or your data be withdrawn from the Matrix platform, please email email@example.com to initiate the process. Matrix staff will contact you within 48 hours to confirm your request to revoke your consent and delete your account. They will follow up with a written confirmation, through email, of account deletion and data withdrawal once the request has been completed.
Q: What kind of data can I share on Matrix?
A: Currently, the patients can only share their medication/supplements, symptoms/activities, general info, and documents through a link generated within the Sharing Center page on the left-hand side of the navigation menu.
Q: How do I download my data?
A: You can download Matrix data, which includes medication/supplements, symptoms/activities, general info, and documents from the Sharing Center found in the Navigation Menu on the left-hand side of your screen. You will not be able to download any survey response data at this time.
Q: Who sees the Health Records I share?
A: The caregiver and/or patient are the only ones to have access to their EHR data.
Q: How will you protect the privacy of my medical information?
A: The Matrix platform was designed and developed to support regulatory privacy and security compliance. All patient and other data that is collected and stored in Matrix is encrypted while in transit and at rest, as required by these regulatory privacy rules. Auditing procedures have been implemented that allow tracking of access to data, and applicable procedures have also been implemented, including security procedures and consents. Matrix has been audited through the American Health Information Management Association (AHIMA) dHealth™ and assessment process. The Matrix platform passed showing that it meets & exceeds industry data protection and security standards for patient data. As reference Matrix is listed on the AHIMA dHealth™ directory – http://AHIMAdHealth.org.
Q: What will you do with the data/information added to the registry?
A: Matrix is a software technology that is leveraged by rare disease patient advocacy groups and foundations. All data and information collected on the platform is stewarded by these rare disease groups and foundations. Across Healthcare will not commercialize or sell data unless directed by these rare disease groups and foundations to do so. In cases where these rare disease groups and foundations decide to commercialize or sell data, patients who have not properly consented or approved of this type release of their data will not be included in any exported data.
Q: What if Across Healthcare is sold, what happens to my data?
A: It is Across Healthcare’s stance that the data is owned by the patient first and is stewarded by the rare disease groups and foundations in which we partner. There are contractual obligations of Across Healthcare to inform of any ownership transition. In the event of an ownership change or even without an ownership change our rare disease groups and foundations can chose to receive and move their data to other products or solutions. All groups can obtain their data at any time even without intent to move.
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.
Q: Is the registry free?
A: Yes. Being a mitoSHARE registry participants does not require you to pay any kind of membership. It is a patient populated registry created to provide support and the opportunity to participate in primary mitochondrial disease related surveys and studies.
Q: How long does it take to sign-up?
A: The process to create a new account takes less than 10 minutes of your time!
“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.”
“Patient registries provide the foundation for the design and successful completion of clinical trials. A registry is a ‘must-have’ for drug development programs.”
“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.”