MitoCanada’s Patient Contact Registry is Here!              

 


The MitoCanada Patient Contact Registry is a secure patient-populated database where patients and caregivers can submit information about living with mitochondrial disease. Collected information will be used in a number of different ways to improve mitochondrial disease care including connecting participants to research opportunities and clinical trials, inform us on the development of educational tools and resources, help us gain a stronger understanding of the mito patient landscape in Canada and strengthen MitoCanada’s advocacy efforts.

 Change is a community movement, and it all starts with you!

 

WHY SHOULD I JOIN MITOCANADA’S PATIENT CONTACT REGISTRY?

When more is known about a disease, more information can be given to newly diagnosed families, more effective treatments can be made available, and more knowledge will exist about how to use these treatments. With each family that shares their experience and knowledge, more information will be added to the knowledge bank, which will help us improve patient care collectively and individually, as what one family shares may eventually help another. 

Our patient contact registry is easy to use. We will ask you to give your point of view on important matters related to living with mito. For example, asking for your view on which symptoms are most important to find treatments for, or which existing treatments you wish there was better information on. Sharing your point of view is extremely powerful, because it helps research funding agencies, pharmaceutical companies, regulatory agencies and our organization learn how to best meet your needs. 

Many dedicated researchers are working hard to unlock important information about mitochondrial disease, but there is still much more that needs to be done – and we need your help. Whether you have been diagnosed or care for someone with mito, your contributions are meaningful. By joining our quickly growing community and sharing your experiences, you’re giving researchers access to crucial data that will help them make discoveries and MitoCanada the information and insights needed to educate and build a knowledgable and empowered community.  

As well, your participation in our registry can help bring new therapies to Canada. Drug companies are much more attracted to develop new therapies for rare diseases, such as mito, to communities that already have registries with useful data and families who have opted in to participate in clinical trials. This saves time and money, and allows for greater chances of success with drug approvals.

As a Canadian mitocommunity, we will move mito research, education and knowledge forward. Join us!

WHO CAN PARTICIPATE? 

Anyone in Canada living with, or caring for someone with, a clinical diagnosis of mitochondrial disease is eligible to participate and you can withdraw at any time.  

HOW IT WORKS

Data on demographic information as well as health history is collected directly from patients and caregivers living with a diagnosis of mitochondrial disease. 

Your information will be given a coded number. Researchers, scientists and other stakeholders studying mitochondrial disease may approach MitoCanada to ask for access to the registry’s data. If granted, they will be able to obtain data for use in expanding their research studies, but will not be able to access your identifying information.  If you are potentially eligible for a clinical trial, the MitoCanada team will reach out to you directly. 

READY TO SIGN UP?

If you’d like to enrol in our MitoCanada Patient Contact Registry, select the button below. Enrollment is voluntary, confidential, and free of charge.

If you have any questions, please email us at: patientregistry@mitocanada.org