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 to:

  • connect you to research opportunities
  • provide you with information on clinical trials 
  • using your input and insights to develop valuable education tools and resources
  • improve MitoCanada’s understanding of mitochondrial disease prevalence in Canada
  • strengthen our advocacy efforts

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

Have Questions? We’ve Got Answers!

Call us: 1-877-708-6486 (MITO)
Email: patientregistry@mitocanada.org 

Join Now

 

 Already registered?

WHY SHOULD I JOIN MITOCANADA’S PATIENT CONTACT REGISTRY?

The more you know about a disease the more information can be shared with families, the more 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 and more will be known about these treatments. 

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. 

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.

Whether you have been diagnosed or care for someone with mito, your contributions are meaningful. 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.
Enrolment is voluntary, confidential and free. 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. 

HOW DO I REGISTER?

If you’d like to join our MitoCanada Patient Contact Registry, select the button below. 

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