LeagueNews - Cerebral Palsy League

The League urged all Queenslanderswith cerebral palsy to participate in theRegister, particularly parents onbehalf of children.“We need to research the populationof those with cerebral palsy to identifythe causes before we can startrecognising the preventions,” MrdeLacy said.“Those aged from five years withcerebral palsy are key to identifyingthe causes of the disability becausethis is the age when the condition canbe confirmed,” he said.Representing 20 per cent ofAustralia’s population, Queensland isforecast to make a huge contributionto the efforts already undertaken byother states in terms of identifying thecauses of cerebral palsy.“There are also factors inQueensland, such as the tropicalclimate and associated infections,which we think might make acontribution to identifying causes,” MrdeLacy said.Raylene Watling said there are manypossible theories as to why her son,Kai, was born with cerebral palsy.“Doctors thought Kai was born withcerebral palsy because I might havebeen pregnant with twins andmiscarried the twin,” Ms Watling said.“It could also be that Kai had a virusat three months old.“Nothing is definite and I hopeinitiatives such as the Register willmake in-roads into understanding andeventually preventing this disability,”she said.Since the launch in August, theLeague has received a goodresponse to the Register and is nownearing its one thousandthparticipant.The Register is owned and operatedby the Cerebral Palsy League ofQueensland and funded byQueensland Health.Queensland CerebralPalsy RegisterPh: 07 3358 8122Fax: 07 3358 8143cpregister@cplqld.org.auwww.qcpr.org.auFresh eyes look out forpeople with cerebralpalsyAFTER launching the QueenslandCerebral Palsy Register (QCPR)during Cerebral Palsy AwarenessWeek, the Cerebral Palsy Leagueannounced its appointment ofClinical Research Manager DrLeanne Johnston.Dr Johnston will work with QCPRstaff to initiate research practicesand outcomes of most benefit toLeague clients, families andcarers.With a background inphysiotherapy and a PHD inpostural muscle timing and upperlimb motion, Dr Johnston’s priorresearch has includedinvestigation of best practiceassessment and treatment forchildren with motor andorthopaedic dysfunction.League Manager ServiceDevelopment and Policy, GeoffRowe said her appointment to theposition was a step forward inenhancing the efficiency andaccuracy of service provision topeople with cerebral palsy.“Dr Johnston has a remarkablehistory and commitment toresearch and practice in paediatriccare to people with conditionssuch as cerebral palsy,” Mr Rowesaid.“Her primary role with the Leaguewill be to facilitate research at theLeague with state-wide andnational collaborators to informservice planning,” he said.Mr Rowe said this would beachieved by (a) identifying bestpractice methodology for existingservices; and (b) act as a trial todetermine practice options foremerging services.“The outcomes will help determinethe best approach to the servicedelivery and help the organisationallocate and lobby for funding,” hesaid.A team of senior professionals insocial work, occupational therapy,speech pathology andphysiotherapy, as well as stafffrom state and national cerebralpalsy registers - including theQCPR - will help with the research.Dr Johnston said she has alreadyoutlined research targets, includingquantitative and qualitative studiesinto links between physical ability andparticipation, as well as the accuracyand reliability of the ActivePAL formeasuring physical activity inchildren.“Research will be used to increaseunderstanding of the nature ofcerebral palsy and the needs ofclients,” Dr Johnston said.“Outcomes on efficiency,effectiveness and equity of servicedelivery can be used to supportbusiness cases for funding,” DrJohnston said.Dr Johnston has worked as anadvanced Paediatric Physiotherapistspecialising in complexdevelopmental disorders includingcongenital and acquired neurologicalconditions such as cerebral palsy,with gait laboratories andphysiotherapy departments.She has also submitted researchinternationally, and has presentedlocally on a range of issues, includingaddresses on neurodevelopmenttherapies and techniques - a popular,non-invasive technique in treatingmotor dysfunction in children withcerebral palsy.Mr Rowe said the League wasexcited about the implications of DrJohnston’s research over the comingyears, and is looking forward toresults from both its new ClinicalResearch Manager, and the QCPR.“We’re looking forward to the first fiveyearlyreport from the Register, aswell as the planned approach toresearch using its resources from DrJohnston,” Mr Rowe said.“The League continues to maintain itscommitment to its services and asClinical Research Manager, we areexpecting Dr Johnston will be able toprovide evidence based researchresults of best practices within arelatively short time frame,” he said.It is estimated there areapproximately 7000 people withcerebral palsy in QueenslandThe QCPR will help determine thisfigure and the requirements oftherapy, as well as investigate thecauses and possible preventions ofthe disability.7