Yesterday I attended a really interesting community forum with Professor Fiona Stanley, among others to discuss the new plans for cerebral palsy research at Princess Margaret Hospital (PMH). Fiona Stanley is the founding Director of the Telethon Institute for Child Health Research, established in Perth in 1990. Fiona has dedicated her life to researching the causes of major childhood illnesses and birth defects so they can be prevented.
Professor Stanley talked about The Western Australian Register of Developmental Anomalies (WARDA). This brings together two registers, the WA Birth Defects Registry and the WA Cerebral Palsy Register under one banner in order to record and monitor developmental anomalies in Western Australia. The collected information will keep track on where and when developmental anomalies occur. This information also guides research and helps to investigate causes, prevention and management of developmental anomalies. Having a register like WARDA is very important. Approximately 1 baby in every 20 (5-6%) is born with a developmental anomaly in Western Australia.
We discussed three main questions around this topic such as our views on the draft consent form, the information on the clinical description form and also our thoughts on becoming involved in research and when the appropriate time to discuss this with the family would be. After each table had given their main views and thoughts on this we had some time for general questions. One lady asked about potential research into the management of adults with cerebral palsy as she found it harder to move and function as she’s getting older. The management plans usually stops when the person is 18 years of age and currently there aren’t many research projects that are looking at the transition into adulthood and beyond unfortunately. This is something they want to change and look into more closely in the future. Another lady asked about the long-term use of Botox and apparently there are some leading research from PMH here in Western Australia and also in the UK at the moment so they should be able to answer that very soon. What they do know is that there are very little side effects compared to the benefits of Botox.
All up it was an interesting evening and I took the opportunity to ask Professor Stanley and her colleague Carol Bower about Cayla’s condition and if they knew of any other children with this in Perth, WA. Apparently there are but they would have to look into it and get back to me in due course.