The Mitochondrial Disease Patient Registry (Mito Registry)
The Australian Mitochondrial Disease Foundation (AMDF) has launched the first Australian Mitochondrial Disease Patient Registry (Mito Registry). Should you wish to join the Registry, you’ll need to provide information on your diagnosis. Click here for a guide for understanding your diagnosis.
What is it?
The Mito Registry is a computerised system that will contain limited information about people suffering from mitochondrial disease (mito). It is a secure system held by the AMDF.
The Mito Registry is not a medical record, and nor is it a detailed patient database developed to track a natural history of mito outcomes. It will contain patients’ names, contact details, date of birth and diagnosis.
Why is it needed?
Currently, no one in Australia has a complete understanding of the number of people with mito, what type of mito they may have, who they are and how to contact them. This is where the Mito Registry comes in.
This situation is echoed around the world, which is why the AMDF is working in collaboration with likeminded organisations around the world, including International Mito Patients (IMP), UMDF (USA), MitoCanada and many others, to include the Australian Mitochondrial Patient Registry in a global registry.
Why should I join?
Being on the Mito Registry will ensure patients have the earliest possible opportunity to enter any relevant study or clinical trial.
There are more clinical trials and studies involving rare diseases looking for participants each day. The Mito Registry will enable AMDF to inform you of ones relevant to your particular type of mito as soon as they call for patients. When researchers or pharmaceutical companies approach AMDF with details of a new study or trial, we will contact those of you that meet the selection criteria. If you choose to be involved, we will pass on the details of the researchers for you to contact. We will never pass on any information to a third party without your
What else will it do?
The Mito Registry will aid diagnosis and track the incidence of mito.
It is estimated that only 5-10% of mito patients are being diagnosed, the others are either misdiagnosed or remain undiagnosed. As you may know, obtaining a diagnosis is often a long and painstaking process, which can take months or years. It’s hoped that the Mito Registry may help speed up this process by allowing us to notify you when new diagnostic methods are available. Also, potentially it should allow doctors to identify geographical regions where patients are not being diagnosed.
Who should join?
Everyone with diagnosed or suspected mito is encouraged to join the Mito Registry. We hope to build a registry of all mito sufferers across Australia. You can also register others who have suspected or diagnosed mito on their behalf but you must make sure you have their consent first.
To assist in the mapping of mito it is important to also include those people who have lost their battle to mito. If you have lost someone, please register him or her and help create a complete picture of mito in Australia.
If you are unsure whether or not you have joined, or have any problems during the process, please call the AMDF office on (02) 8033 4113 or email our Services Team Leader at firstname.lastname@example.org.
Visit the AMDF Mito Resources factsheet library to find information that can help you fill out the Mito Registry form.