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 opening soon. To be informed when we are live, join our wait list.
 

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

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.

“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