Share Your Family’s Mito Journey
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The more we know; the more we can help. Clinical and research leaders from CHOP’s Mitochondrial Medicine team encourage families to join mitoSHARE, a worldwide patient-populated registry initiative stewarded by the United Mitochondrial Disease Foundation (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, leading to improved diagnoses, treatments and cures – and enhanced standards of clinical care.
Who should register?
Through mitoSHARE, we hope to identify and characterize as many patients as possible – both children and adults – around the world. Neither you nor your child need to have a confirmed diagnosis of mitochondrial disease to join the registry; we know it often takes years before a confirmed diagnosis and many families face long diagnostic journeys. We encourage parents, guardians and caregivers to join and share their perspective as well.
Why is patient and family participation critical?
Participation in mitoSHARE is an opportunity for patients and families to provide their perspective and share their mitochondrial disease journey. Confidently and securely sharing your information with registries like mitoSHARE helps clinicians and researchers achieve their mission of discovering treatments and a cure for mitochondrial disease.
What are the benefits of participation in mitoSHARE?
When you enroll in mitoSHARE, you’ll have the ability to safely and securely upload your and/or your child’s health records and genomic data. You’ll have the opportunity to participate in studies and surveys on a variety of topics including demographics, barriers to care, natural history and clinical trials. You have control over your data and how much you choose to share. You’ll also have the ability to access and share your personal records with other clinicians as needed.
How to get started
MitoSHARE created a step-by-step users guide to help families get started and become part of the registry. Learn how to create an account, read terms of use, learn about informed consent, general information and the account dashboard for patients and caregivers.
Download the mitoSHARE How to Get Started PDF.
Still have questions about mitoSHARE or need technical support? See the mitoSHARE FAQs.
