What is the Mito Registry?
The Mito Registry collects important information about Australians with confirmed or suspected mitochondrial disease (mito) for the purpose of research into treatments and cures.
The primary aim of the Mito Registry is to establish a significant base of patient data to attract clinical trials to Australia, ensuring our mito community benefits from the latest developments in mito medicines and treatment.
Why should I join the Mito Registry?
Joining the Mito Registry will ensure you have the earliest access to new treatments by having the opportunity to take part in a relevant study or clinical trial.
And, the benefit goes even broader than improving your own health outcomes. Being part of the Mito Registry means that you can contribute to ground-breaking medical advancements which lead to a brighter future for the entire mito community.
You do not need to have a confirmed diagnosis to join the Mito Registry. If you or any family members are suspected of having mito and are going through a diagnostic journey, there is great value in being on the Mito Registry.
What is a clinical trial?
Clinical trials are research studies that evaluate a new medical intervention or treatment. They are an essential part of developing new treatments to discover better ways to prevent, detect or treat diseases like mito. Ultimately, these discoveries lead to better health outcomes.
Is my data safe?
Information on the Mito Registry is treated as confidential and will not be disclosed to any third party. We use the Mito Registry to identify people that meet the selection criteria for an upcoming study or clinical trial, and then contact them directly to ask if they would like to be involved. We will then put interested people in touch with the clinician undertaking the study.
Research into mito is at an exciting stage, with many promising advancements on the horizon. There are an increasing number of clinical trials emerging and Mito Foundation is working hard to establish the Australian mito community as a worthwhile market. Australians with mito deserve the earliest possible access to these innovative trials, but we need a significant base of patient data to attract them.
Currently there are no cures for mito and few effective treatments. Clinical trials are an essential part of driving the medical advancements the mito community so desperately needs and deserves.