Background

There is currently no Australia-wide database to collect information about people with mitochondrial disease. This makes it extremely difficult to keep track of the incidence of mitochondrial disease, how it affects people both short term and long term including the cost to the individual and the economy as a whole.

 

Project Overview

By engaging with the Centre for Population Health Research at Curtin University of Technology, the Mito Foundation hopes to establish a national patient registry – which is essentially a computerised National Mitochondrial Medicine Patient Database.

 

Objectives

To measure the rate of mitochondrial disease in Australia
To establish which organs are most at risk of becoming affected by mitochondrial disease and in what way
To determine the short and long term outcomes of mitochondrial disease
To estimate the economic cost of mitochondrial disease, whether by hospital or allied health service usage, or by work hours lost
To evaluate new treatments in mitochondrial disease for both safety and efficacy

Benefits

There are numerous benefits of having a National Mitochondrial Medical Patient Database. The establishment of this database will allow the Mito Foundation to gather new information on how the disease affects individual patients, which will also assist with further research. In addition, this database will provide accurate and useful information to treating doctors allowing for the best care possible for that one individual. This will not only provide confidence for the treating doctor but also to sufferers and their families as they seek the most effective treatment.

Furthermore the establishment of the database will assist in measuring the effects of future available treatments- what works best and what doesn’t.

New information on mito can only bring us one step closer to finding a cure!