MS Research Australia is delighted to have been allocated a generous $25,000 grant from the auDA Foundation to support the development of an online MS Portal.
Led by Associate Professor Ingrid van der Mei at the Menzies Institute for Medical Research in Tasmania, this innovative project will link all the available data on Australian MS patients in major existing databases, providing evidence-based information to assist clinicians in developing the most effective long-term treatment plan based on the individual’s needs. In addition, the improved tracking of people with MS over time will provide important opportunities to identify factors that reduce the progression of MS, or those that can improve the lives of people living with the disease.
Currently several separate data sets exist which contain important statistical information on people with MS. This includes treatment decisions and outcomes, issues of importance in quality of life and the economic impacts of MS. This project aims to develop a powerful web-based MS Portal that will link together the data records from two ongoing long-term studies of MS illness outcomes, for those individuals who have contributed to both data sets (subject to a person providing their consent); thereby making the best use of the existing data, and creating a powerful combined data set.
Established in 2005 by .au Domain Administration (auDA), the auDA Foundation is a charitable trust which aims to promote and encourage educational and research activities that will enhance the utility of the internet for the benefit of the Australian community. The auDA Foundation is supporting the first stage in the development of the MS Portal, which will involve the linkage of two existing datasets:
- The Australian MS Longitudinal Study – an ongoing MS Research Australia project designed to collect data of practical use for improving the lives of Australians living with MS. Over 3500 Australians with MS already contribute to this study by completing regular postal and online surveys.
- MSBase – a clinical database of over 31,000 patient records, which is contributed to by participating physicians and is dedicated to sharing, tracking and evaluating data on the long-term illness outcomes in people with MS.
Chris Disspain, auDA Foundation Director and CEO, said ‘We are thrilled to be supporting this innovative MS Research Australia project, which will use the power of the Internet to provide improved outcomes for people living with MS. We look forward to hearing about the project’s progress and sharing these outcomes in the Knowledge Centre on the auDA Foundation’s website.’
This project is an extension of the Australian MS Longitudinal Study, also led by Associate Professor van der Mei at the Menzies Institute for Medical Research.
For more information about the auDA Foundation, please visit their website at www.audafoundation.org.au or through social media – Facebook and Twitter.