Palsy register fills a research void
because existing state-based registers show CP incidence are becoming more common, Stanley says.‘‘We know it’s (due to) increased survival of babies who would have died (before the era of paediatric intensive care),’’ she says. ‘‘ But otherwise we don’t know — and we need to know.’’
The other questions parents asked when told their baby has cerebral palsy are, is there anything else they could have done to prevent the condition, and what can they do to improve their baby’s outcome.
‘‘ They ask ‘ should I be in an early intervention program’, or ‘ should we have Botox [for the baby]’,’’ Stanley says.
‘‘ What a national register would do is enhance research into management.’’
Although Western Australia and some states already have registers, a linked national scheme is important because of the relative scarcity of CP as a condition.
Only about two babies per 1000 are born with cerebral palsy. With a relatively small 10 per cent share of the nation’s annual 260,000 birth rate, Western Australia’s CP register only has a pool of 25,000 births annually from which to base its register.
While nobody wants more cases of cerebral palsy, researchers need larger samples from which statistically significant results can be derived.
Western Australia’s 30-year-old register is significantly older than those of other states. Victoria’s register has been going for about half that time, while South Australia’s register is about 10 years old. NSW and Queensland both have registers, but they have been running for less time.
Stanley says putting all this data together ‘‘ will have immediate benefits’’. ‘‘ It will take a while for the register to get up,’’ she says. ‘‘ But it’s a great model — if we can do this for cerebral palsy, and we already do this for cancer, we can do it with other diseases, such as diabetes and other things that are rarer.
‘‘ I think the parents of children with cerebral palsy deserve this register — they are often neglected, and it’s really important for services that we give [governments] accurate numbers [on people affected].’’
AUSTRALIA will have one of the world’s best tools for research into cerebral palsy from next week with the launch of a national register to record all cases. The scheme will, in time, create the world’s largest databank of cerebral palsy cases, which should not only help researchers narrow the causes of the condition, but also help improve treatments for families.
Cerebral palsy — a permanent disability that affects movement, caused by damage to the developing brain usually before birth — affects about 700 babies in Australia each year and costs taxpayers $1 billion annually.
The national register will be launched on Tuesday by professor Fiona Stanley, who started Australia’s first state-based cerebral palsy register in Western Australia in 1976, and has been lobbying for a national scheme ever since.
Details of babies with cerebral palsy will only be entered onto the register with the written consent of families involved.
Its creation has the backing of the Spastic Centre, which is encouraging parents to join. Spastic Centre CEO Rob White says there is ‘‘ still a lot we don’t know’’ about cerebral palsy. ‘‘ We have a big job ahead of us and we’re committed to it, but we need everyone’s help,’’ White says. ‘‘ Potentially, the answer to preventing CP lies in the hands of Australians joining the register.’’
It is estimated that a child is born with CP in Australia every 18 hours. However, there is no test parents can have to let them know their child has suffered cerebral palsy, there is no cure, and in most cases the individual cause remains a mystery.
There are thought to be as many as 45 factors that can cause CP. However, Stanley says it is now thought to almost always have its origins during the pregnancy, not as a result of asphyxia during childbirth — a finding she says has come ‘‘ too late to save obstetrics’’. Many specialist obstetricians have been deterred from continuing to practise because of the sky-high legal payouts to cerebral palsy patients, who argued successfully in court that their injuries were the result of the negligence of the doctor in charge of their birth.
The most famous example of this was Sydney woman Calandre Simpson, who won over $14 million from doctor’s insurer United Medical Protection in 2001.
‘‘ The first question a parent has when they have a diagnosis of cerebral palsy is: why did it happen to my child?’’ Stanley says. ‘‘ That’s the question we are asking with this National Cerebral Palsy Register.’’
The question was particularly pressing
Immediate benefits: Professor Fiona Stanley says Australia desperately needs this database