Palsy reg­is­ter fills a re­search void

The Weekend Australian - Travel - - Health - Adam Cress­well

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

Pic­ture: Colin Murty

Im­me­di­ate ben­e­fits: Pro­fes­sor Fiona Stan­ley says Aus­tralia des­per­ately needs this data­base

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