Professor Carolyn Sue
Kolling Institute, University of Sydney
Building a National Clinic Database for Patients with Mitochondrial Disease to Provide a Future for Precision Medicine
The lack of knowledge about mitochondrial disease (mito) means that it is extremely difficult to assess the effectiveness of treatments and therapies.
Using the funds from the Mito Foundation Booster Grant, Professor Sue will lead clinical and public health teams at Royal North Shore Hospital and Kolling Institute for Medical Research to design the first custom-built, secure national clinical database for adult patients with mitochondrial disease.
The database will assist in the assessment of new treatments and preventative strategies, and will help to improve the care and treatment of patients.
It will form part of the infrastructure needed to develop a sustainable research and health workforce which will work for the benefit of patients. The database will be an important tool in national and international collaboration between clinicians and researchers, playing a role in the establishment of a network of clinical centres to co-ordinate health services.
The database will enable a standardised collection and analysis of large amounts of clinical and genetic information specific to patients with mito. The information will facilitate evaluation of how mito affects Australian patients and will be used to assess the effects of new treatments.
The system will enable the evaluation of current standards of care including use of preventative strategies, such as family planning. It will also assist in attracting clinical trials to Australia, giving patients the opportunity to access new therapies earlier.