mitoShare: UMDF’s Patient-Driven Registry

Coming Soon

We are pleased to announce that UMDF is preparing to take this registry to the next phase, which includes a makeover and a new name. You can expect the “new” registry called “mitoShare” to be available in early 2021. 

Looking to sign up for our new mitoShare registry?  Share your email to be notified when our registry opens.

Current Registry Participants

Thank you for being actively engaged in the Mitochondrial Disease Community Registry. The data you’ve provided during the past five years has led to interesting findings, some of which are captured in this recent UMDF publication.

We are temporarily suspending registry access until the launch of mitoShare. Please be assured that your account and data are secure and saved. If you have questions, concerns or need access to your data, contact registry@umdf.org.

Current Registry Participants

Thank you for being actively engaged in the Mitochondrial Disease Community Registry. The data you’ve provided during the past five years has led to interesting findings, some of which are captured in this recent UMDF publication.

We are temporarily suspending registry access until the launch of mitoShare. Please be assured that your account and data are secure and saved. If you have questions, concerns or need access to your data, contact registry@umdf.org.

What Is 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 from the patient perspective.

Energize the Fight for Today and Tomorrow

Sharing your data with the best minds and medical centers studying mitochondrial disease will accelerate science. Not only will this generation of patients benefit, but future generations will have access to more effective treatments, and perhaps a cure.

Doing your part to energize the fight means:

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Physicians can access and analyze aggregated data to advance the standards of patient care.

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Researchers globally can work to better understand the causes of mitochondrial disease.

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Participants are quickly alerted of new clinical trials, studies and surveys relevant to them.

“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

Enrollment & Expectations

When you enroll in mitoShare, you control your data. Sharing means only UMDF-approved mitochondrial disease researchers will access deidentified data in the platform. Your data never leaves the platform. You can delete your data or revoke your consent at any time.

Here are a few examples of what you may be asked to share:  

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Symptoms: What types of symptoms does the patient exhibit?

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Genetics: What is the family history of the patient’s birth mother?

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Nutrition: What vitamins and supplements are being administered to the patient?

Registry Opening Soon

Questions? Contact our mitoShare Registry Coordinator, Katarina Gray, at registry@umdf.org