Patient Registry

Pathway to Research

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ATAD3A Patient Advocacy Alliance has partnered with the United Mitochondrial Disease Foundation to bring patients into their mitoSHARE registry. The goal of mitoSHARE is to advance scientific research using data gathered from patients and families affected by mitochondrial disease. 

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Why join mitoSHARE?

 

One of the founding tenets of the alliance is to help organize patients with ATAD3A mutations so that we are research-ready. The first step in this process is to collect a consistent set of data for each patient, including genetic testing results and history of medical treatment and symptoms, so that researchers can have a clear picture of our population.

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mitoSHARE is a free platform that collects this information while maintaining the confidentiality and security of the patients represented. Being a part of mitoSHARE will not only allow patients to participate in research associated with the ATAD3A Patient Advocacy Alliance, but also to be notified of other opportunities for clinical trials or projects from the greater mitochondrial disease research community. 

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mitoSHARE is currently available in English and is accessible to patients around the world. A Spanish option will be added soon, with more languages to come.

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How to join mitoSHARE?

 

To register with MitoSHARE, a patient or their representative will set up a secure account at umdf.org/mitoshare-registry and complete a series of short surveys. Patients have the option to upload their health (Electronic Health Records) and genomic data (genetic testing files) to the platform. Expect to spend a couple of hours completing registration, although it does not have to be done all at once.

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Special Considerations for the ATAD3A community:

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• When enrolling, please select first “Rare Disease(s) - please select all that apply” and then “ATAD3A-related disorder (Harel-Yoon syndrome)” for your diagnosis. This will ensure that you are grouped with our patients.

• You may select Dr. Wanhee Yoon and Dr. Tamar Harel from the “Clinician” dropdown list if you wish to share your information directly with the researchers who are currently studying ATAD3A mutations. Alternatively, these and other researchers can request anonymized data from MitoSHARE.