15 May 2018

Four Reasons to Join the Mito Registry

The Mito Foundation Mitochondrial Disease Patient Registry (Mito Registry) is the first and only registry of its kind in Australia. It is a secure database containing limited information about people diagnosed with or suspected to have mitochondrial disease (mito). Information contained simply includes names, contact details, dates of birth and diagnosis details, if any.

Here are 4 reasons to join the Mito Registry, if you have diagnosed or suspected mito:

1.    You will be the first to know about clinical trials and studies

There are clinical trials and studies into rare diseases happening and you may be missing out. The Mito Registry enables us to contact you when participation opportunities arise particular to your type of mito. By being involved in a clinical trial, you will help bring a treatment from the laboratory to patients. By participating in a study, you will be contributing to results which could shape policy around standards of care for or social issues concerning mito patients. We are also preparing to merge our Mito Registry with a global registry to provide Australian patients with the chance to participate in trials worldwide.

2.    You will help attract clinical trials to Australia

For Australian mito patients to have access to treatments, the treatments must first undergo clinical trials to confirm they are effective and safe. However, international pharmaceutical companies may not conduct trials in Australia if participation seems unlikely. Therefore, being a collective database of potential participants, the Mito Registry is helping to position Australia as a good place for clinical trials to take place. This will help ensure that Australian mito patients do not miss out on treatments being found overseas.

3.    You will be notified about new diagnostic methods available

Remember, you don’t need to have a confirmed diagnosis to join the Mito Registry. As you may know, obtaining a diagnosis is often a long and painstaking process, which can take months or even years. The Mito Registry aims to speed up this process by allowing us to notify you when new diagnostic methods are available.

The Australian Genomic Health Alliance (AGHA) project, co-funded by the Mito Foundation, is offered directly to Mito Registry members. This project gives those who meet the entry criteria access to state-of-the-art genetic testing for mito. To ensure you don’t miss this opportunity, and others like it, you must join the registry.

4.    You will help identify geographical areas of low diagnosis

No one currently knows how many people have mito. The Mito Registry tracks the incidence of the disease and helps determine areas of low diagnosis. This will help identify areas in which education of medical professionals is required. To assist in the mapping of mito, it is important to include people who have sadly lost their battle.

Click here for more information about the Mito Registry.

The Mito Foundation will never share your information on the Mito Registry with third parties without your permission.

If you register someone on their behalf, you must obtain their consent first.

If you have any questions, please contact Tim Burchell at tim.burchell@mito.org.au.