MitoCanada Patient Registry

Help Create Change: Join the MitoCanada Patient Registry

When Canadians living with mitochondrial disease share their lived experiences and insights, real change happens.

The MitoCanada Patient Registry is a vital, patient-powered tool that strengthens research, improves care and amplifies the Canadian MitoCommunity’s voice. The insights shared through our registry help guide clinical trials, education and support program development and national advocacy efforts, ensuring that everything we do is grounded in real lived experience.

What Is the MitoCanada Patient Registry?

The MitoCanada Patient Registry is a secure, confidential, patient-populated database where Canadians living with mitochondrial disease and caregivers can share information about diagnosis, symptoms and daily lived experiences.

Participation is:

Voluntary
Free of charge
Confidential and secure
Flexible – you may withdraw at any time

The registry supports research readiness, program development, education and advocacy, ALWAYS with the goal of improving quality of life for Canadians affected by mitochondrial disease.

Why the MitoCanada Patient Registry Matters

There are many registries worldwide. What makes ours different is its purpose: The MitoCanada Patient Registry exists to serve the Canadian MitoCommunity.

Information shared through our registry helps us:

Bring mitochondrial disease clinical trials to Canada by demonstrating a ready, engaged patient community
Inform the development of education and support programs that reflect real needs of the Canadian MitoCommunity
Strengthen advocacy efforts with credible, Canadian insights that policymakers and partners need to know to support our efforts
Ensure patient and family voices guide decisions about research priorities, care pathways and access to therapies in Canada

Thanks to our registry participants, three mitochondrial clinical trials have already come to Canada over the last three years, and we continue to work with research and industry partners to ensure future trials include Canada.

How Your Participation Makes an Impact

Your lived experience is expertise, and it drives progress.

By joining the registry, you help:

Build a clearer picture of mitochondrial disease experiences across Canada
Identify gaps in care, education and support services
Shape new MitoCanada resources, programs and tools for patients and caregivers
Support awareness and advocacy efforts with meaningful, patient-reported insights
Stay informed about research studies and clinical trial opportunities when they arise

This information allows MitoCanada to respond more effectively, not with assumptions, but with evidence informed by the Canadian MitoCommunity.

Your Privacy and Data Security Matter

We understand that sharing personal health information is a significant decision. Protecting your privacy is our top priority.

All MitoCanada registry data is handled in accordance with Canada’s privacy laws (including PIPEDA and applicable provincial legislation).

All registry data is securely stored on Canadian servers
Data handling adheres to Canada’s robust privacy and data protection standards
Your personal data is not sold or shared
Access to information is restricted and safeguarded
Your information is only accessed by MitoCanada’s patient registry research team
Participation is voluntary and you may withdraw at any time

MitoCanada is committed to maintaining the highest standards of data security and confidentiality, and to using registry information responsibly, ethically and in the best interest of the Canadian MitoCommunity.

Who Can Participate?

You are eligible to participate if you:

Live in Canada
Are living with a clinically diagnosed mitochondrial disease
Are caring for someone living with a clinically diagnosed mitochondrial disease

Every person who joins strengthens our collective understanding and our ability to act.

Interested, but have questions? That’s completely understandable.

Sharing information is a personal decision, and we want you to feel informed and comfortable. If you’d like to learn more about how the registry works, how your data is protected, or how insights are used to support research, programs and advocacy, we’re here to help.

You can send us an email with your question(s) to PatientRegistry@MitoCanada.org or give us a call at 877-708-6486 (MITO)