THE Neurosurgical Society of Australia says the Australian Shunt Registry is ready for data, but its future remains “challenged” without ongoing funding.
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Society president Mark Dexter said the registry would improve patient safety and quality of care for patients with hydrocephalus and related conditions by monitoring and analysing of procedures performed in Australia.
He said the society contracted Monash University to help develop and host the registry database after the federal government allocated $165,000 to the cause in 2013.
“This initial development has been completed and the Registry database is ready for data,” Mr Dexter said.
“Earlier this year, ethics applications were submitted to the Sydney Children’s Hospital Network to commence collection of data for the Registry across the Sydney Children’s Hospital and The Children’s Hospital at Westmead.
“We are currently waiting on the outcome of the application and remain hopeful that data collection as part of the Registry will commence in the near future.”
Mr Dexter said the long term goal was to expand the number of hospitals so it represented data from all Australian hospitals undertaking shunt procedures.
“While the government funding has been crucial in establishing the registry we have been advised that any further development, implementation and maintenance funding will be the responsibility of the (society),” he said.
“This is obviously a great disappointment.
“Without an ongoing reliable funding source, the long-term sustainability of the registry is challenged.
“However, the NSA is absolutely committed to the registry and will be looking to its neurosurgical members, company sponsors and fundraising to help make the registry a success.”
Mr Dexter said those living with hydrocephalus, and their families, faced daily struggles.
He praised the Coppin family for their ongoing battle for the cause.
“We greatly appreciate the passion for this cause shown by Jane Coppin with the Dollar for Darcy campaign,” he said.
“Shunt systems are used very successfully in the treatment of hydrocephalus however complications can be common which often require repeat surgery.
“Ultimately our goal is to improve the quality of life for people living with hydrocephalus and we believe the registry is an important initiative in achieving this.”