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SOLVE @RCH ANNUAL REPORTJ A N U A R Y 2 0 1 4 – D E C E M B E R 2 0 1 5
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 1 18/05/2016 3:41 PM
CONTENTSCHAIR OF THE ADVISORY PANEL 02 EXECUTIVE SUMMARY 03 KEY PARTNERS AND FUNDERS 04 OUR VISION 05 OUR HISTORY 06
ADVISORY PANEL MEMBER 10
OUR FAMILY 11
RESERACH RESOURCES 12
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 2 18/05/2016 3:41 PM
CONTENTS | 01
HIGHLIGHTING CURRENT PHD PROJECTS CO-SUPERVISED BY OUR STAFF 22 INTERVIEWS 24 TRAINING AND EDUCATION 28 FUNDING 29 STAFF 30
PUBLICATIONS PAST 5 YEARS 32
ADVISORY PANEL 37
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02 | CHA I R OF THE ADV ISORY PANE L
CHA I R OF THE ADV ISORY PANE LIn2014Solve@RCHreachedtheverysignificantmilestoneof10yearssinceProfessorDinahReddihoughbroughttogetheraverysmallgrouporcolleagueandparentsofchildrenwithdisabilitiestoestablishacentrefordevelopmentalmedicineresearch.WewerethenhonouredthatProfessorSirGustavNossalformallylaunchedSolve@RCHin2006.
Itisthereforeanappropriatetimetolookbackandreflectonmorethan10yearsofremarkableachievements.
Inthisshorttime,twonewfullyendowedchairsinDevelopmentalMedicinehavebeencreatedatTheRoyalChildren’sHospital,Melbourne(RCH)–theApexAustraliaChairinDevelopmentalMedicineheldbyProfessorKatrinaWilliamsandTheLorenzoandPamelaGalliChairinDevelopmentalMedicineheldbyProfessorDavidAmor.
In2015TheApexFoundationforResearchintoIntellectualDisability(AFRID)receivedcourtapprovaltowindupitsactivitiesandgiftitscorpustotheRCHFoundation.ThiswasmatchedbyaverygenerousprovisionfromtheRCHFoundation.WearedeeplyindebtedtotheTrusteesofAFRIDfortheconfidenceandtrusttheyhaveshown.
In2011ProfessorDinahReddihoughwasawardedaViceChancellor’sFellowshipfromtheUniversityofMelbourneandinlate2013sheestablishedAustralia’sfirstNationalHealthandMedicalandResearchCouncil(NHMRC)CentreforResearchExcellence(CRE)inCerebralPalsy.
TheCREincludesfundingfor10PhDstudentsandsoitishelpingtobuildthenextgenerationofleadersincerebralpalsyresearch.ThisisinadditiontomanyotherpostgraduatestudentswhohavebeenattractedtodevelopmentalmedicineasanareaofvitalresearchthroughSolve@RCH.
In2011ProfessorKatrinaWilliamsbecameDirectoroftheDepartmentofDevelopmentalMedicineatTheRoyalChildren’sHospital.SincethencompetitiveresearchfundingandPhDsupervisionhavegrown,ashavepublicationsinhigh-impact,peer-reviewedjournals.
NoneofthiswouldhavebeenpossiblewithoutthecommitmentofSolve’scliniciansandresearcherstobeworld-bestbystrivingforandattainingmaximumresearchimpact,anddevelopingandleveragingkeypartnershipsandcollaborations.Norwouldithavebeenpossiblewithoutthesupportofstrategicandvisionaryphilanthropists.GoingforwardthereisnowaplatformtomakeanevenbiggerimpactinthelivesofchildrenwithdisabilitiesandtheirfamiliestowhichSolve@RCHisdedicated.
Bruce Bonyhady AMChair,Solve@RCHAdvisoryPanel
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 4 18/05/2016 3:41 PM
EXECUT I VE SUMMARY | 0302 | CHA I R OF THE ADV ISORY PANE L
E X ECUT I VE SUMMARYThepasttwoyearshavebeenbusyandproductivewithmajorachievementsacrossresearch,training,clinicalcareandadvocacy.Theteamhasgrownandcontinuestobehighlymotivatedandtoworkinawell-integratedwayacrossdisciplines,organisationsandclinicalandresearchareasofexpertise.
I’dliketothankallstaffandourpassionateandactiveAdvisoryPanelmembers,whoareexperts,consumersandfundraisers.FarewelltoEnverBajraszewski,TessLionti,MelindaRandallandMichelleNelthroppwhohaveretiredormovedtonewpositions.Welcometoour11newstaff(seeTable2).InparticularweapplaudthesuccessofDrAdrienneHarvey,whohasbeenawardedaprestigiousMelbourneChildren’sCampusCareerDevelopmentAward,andourstafforstudentswhohavesuccessfullycompletedhigherdegrees.
ProfessorDinahReddihoughhasledacollaborationofAustralianandinternationalexpertcolleaguestoembarkonthebodyofworkfundedasaCentreofResearchExcellenceGrantforCerebralPalsy(CRE-CP)bytheNationalHealthandMedicalandResearchCouncil(NHMRC).Areportofthemanyachievementsstemmingfromthisgrantisprovidedonpage16.Thanksalsotoalltheleadandco-investigatorsandpartnerorganisationsweareworkingwithforNHMRCandARCfundedprojects(seeTable1).
ThesearchandappointmentprocessforTheLorenzoandPamelaGalliChairofDevelopmentalMedicine,madepossiblebyagenerousdonation,isnearlycomplete.TheApexAustraliaFoundationforIntellectualDisabilityResearchhasalsopartneredwithTheRoyalChildren’sHospitalFoundationtoendowTheApexAustraliaChairofDevelopmentalMedicine,whichsupportsmycontinuingrole.
Wehavebuiltanewwebsitethatistheplatformuponwhichourcommunicationandtrainingstrategyisbuilt.Wearenowreachingmorethan1000professionals,parentsandpeoplelivingwithdisabilityviaourmailinglist,andouronlineandface-to-facetrainingwasaccessedbyover400individualsoverthepasttwoyears.
Wehavecontinuedtopublishinjournalsthatareeithertop-tierforourareasofworkorthemostrelevantforreachingcliniciansweneedtocommunicatewithaboutourresearchandtranslationactivities.Wehavecontinuedtoattractfundingfromcompetitiveresearchgrants,andalsotobesupportedbygovernmentandphilanthropicfunders.
Ourresearchdatabasescontinuetobeacrucialplatformforresearch,especiallytheVictorianCerebralPalsyRegister(VCPR),whichisinternationallyrecognised.Inthepasttwoyearswehavestartednewdatabaseswiththesupportofphilanthropicfundingand/orrelationshipswithcolleaguesworkingatothersites.WenowhaveaNeuralTubeDefectsRegister(NTDR)andethicsapprovaltorecruitfortheMeltonDevelopmentalDifferencesDatabase(M3D);seepages14and15formoreinformation.
Thepasttwoyearshavealsoseenusdevelopresearchpartnershipswithparentsandcarersofchildrenandyoungpeoplewithadisability.Wehavealsoworkedmorecloselywithourbioethicsandeconomicscolleagues.Thisistoensurewekeepinsighttheimportantsocialandfinancialimplicationsoftheworkwearedoing.
Everythingwedoisdesignedtoassistchildrenwithdevelopmentaldisabilitiesandtheirfamilies.Someofourworkwilltakelongertochangethelivesofchildren,butneedstobestartednowtohelpfuturegenerations.Otherworkwillbereadytobeincorporatedintobestpractice,servicedevelopmentandpolicyassoonasitisfinished.Weareworkingtowardsthedaywhenallchildrenandfamiliesreceiveeffectivecarethatistailoredtotheirneedsattheoptimaltime.Thepartnershipswe’reformingacrosssectors,specialtiesanddisciplineswillhelpusmaketheprogressweneedtowardthisgoal.
Professor Katrina WilliamsTheApexAustraliaChairofDevelopmentalMedicine,UniversityofMelbourne;Director,DevelopmentalMedicine,TheRoyalChildren’sHospital
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04 | KEY PARTNERS & FUNDERS
K EY SUPPORTERS & FUNDERS
ApexFoundationforResearchintoIntellectualDisability
VictorianMedicalInsuranceAgency
WIL L IAM COL L I E T RUST
THE LORENZO AND PAMELA GAL L I CHAR I TAB LE T RUST
DepartmentofHealthandHumanServices
ROYAL CH I LDREN ’S HOSP I TA L FOUNDAT ION
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OUR V I S ION | 0504 | KEY PARTNERS & FUNDERS
KEY RESEARCH ACT IV I T I ES
•Buildingcrucialresearchinfrastructure.
•Undertakingdiscoveryresearch.
•Embeddingbestevidenceinclinicalcare,serviceandpolicy.
UNDERP INN ING PR INC I P L ES
•Transdisciplinaryresearchisneededtomakeadvancesinresearch.
•Truecollaborationisneededtoachieveourmission.
•Allpotentialconflictsofinterestinresearchshouldbetransparent.
•Attractingfundingandpublishingourfindingsarenecessaryactivitiesonthepathwaytoachievingourobjectivesbutarenotthedesiredendpoint.
•Sharedknowledgeandexperiencewillhastenachievementofourmission.
•Informationwillbedisseminatedtoallwhoneedit.
V I S ION
Toprovideleadershipinchildren’sdisabilityresearch,bestpractice,advocacyandpublicpolicy.
MISS ION
Toimprovehealthandwellbeingofchildrenwithdisabilitiesandtheirfamiliesandbetterunderstandthecausesofdevelopmentaldisability.
GOALS
Tobeatransdisciplinaryandintersectoralcentreofresearchexcellencethatwill:
•advanceunderstandingofthecauses ofdevelopmentaldisability,
•developandtestpreventionandtreatmentstrategies,and
•improvethewayweprovidecareandservicesforchildrenwithdisabilityandtheirfamilies.
OB JECT I VES
•Builddevelopmentaldisabilitydataresources.
•Workcollaborativelywithotherorganisationsinvolvedinthecareofchildrenwithdisabilitiesandrelevantresearchorganisations.
•Increasethefutureworkforceofdevelopmentaldisabilityclinicianresearchersandscientists.
•Raisetheprofileofresearchindevelopmentaldisabilities.
OUR V I S ION
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06 | OUR H IS TORY
OUR H IS TORYWearenowawell-integratedclinical,researchandtrainingcentrelocatedatTheRoyalChildren’sHospital(RCH),Melbourne,workingwiththreecampuspartners:TheUniversityofMelbourne,RCHandtheMurdochChildrensResearchInstitute.Employeesofallthreeinstitutions–nowmorethan50innumber–workasclinicians,clinicianresearchers,scientistsandadministrators.Wehavelinkstonon-governmentservicesandotherpublicsectorservicesatbothfederalandstatelevelsinhealth,educationandcommunityservices.WearegovernedbytheRCHprofessionalandethicalstandardsandourownAdvisoryPanel.Ourresearchworkincludesthebreadthofdevelopmentalproblemsanddisabilityandusesrobustresearchmethodstoanswerimportantquestions(Figure1).Wearewellconnectedtocareandthecommunity,whichmeansweareideallyplacedtotranslateevidencetopracticeandservicedelivery.
Figure 1. Thetypesofresearchmethodsweusetoanswerimportantquestionsforalltypesofdevelopmentaldifference.
Howdidwegettowherewearetoday?In1986theDepartmentofDevelopmentalPaediatrics(subsequentlyrenamedChildDevelopmentalandRehabilitationandthenfurtherrenamedDevelopmentalMedicine)wasformedattheRCHandDinahReddihough.NowaProfessorattheUniversityofMelbourneandaMemberoftheOrderofAustralia(AO),wasappointedastheDirector.ProfessorReddihoughengineeredmajorgrowthintheclinicaldepartmentandinresearch.In2004sheformedtheCentreofDevelopmentalDisabilityResearchbecauseoftheurgentneedtoincreaseknowledgeaboutcausesofdisabilityinchildhoodandtheoutcomesoftreatment.TheCentrewasrenamedSolve@RCHandlaunchedbySirGusNossalon8March,2006.
Types of research and clinical domains
Autism and social
communication disorders
Cerebral palsy and other physical
disabilities
Intellectual disability and
known genetic disorders
Biological science and genetics Clinical science* Systematic review methodsPopulation health and data science
What is the cause?
What are effective interventions?What does the future hold?Is the diagnosis accurate?
How common is this?Are we making best use of health services?
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SOLVE@RCH | 0706 | OUR H IS TORY
In2011thefirstChairinDevelopmentalMedicineinAustralia,TheApexAustraliaChairofDevelopmentalMedicine,wascreatedinpartnershipwiththeApexFoundationforResearchintoIntellectualDisability,theUniversityofMelbourneandtheRCHFoundation.ProfessorKatrinaWilliams,aleaderinautismresearch,wasappointedbothastheChairandasDirectoroftheDepartmentofDevelopmentalMedicineattheRCH.
DinahwasawardedaUniversityofMelbourneViceChancellor’sFellowshipin2011.In2012wewereabletoformaliseanexistingtrainingroleforDevelopmentalMedicinewiththeappointmentofatrainingcoordinatortoleverageelectroniccommunicationandtrainingopportunities.In2013,TheLorenzoandPamelaGalliFoundationgenerouslydonated$5milliontoendowTheLorenzoandPamelaGalliChairinDevelopmentalMedicine.TheUniversityofMelbournealsoagreedtosupportanadditionalthreeyearsoffundingtosupportProfessorReddihough’sresearch,startingin2015.During2015theApexFoundationforResearchintoIntellectualDisabilitydonated$2million,whichwassupplementedbytheRCHFoundation,toendowTheApexAustraliaChairofDevelopmentalMedicine.
Theclinicalworkthatwedohasalsochangedinlinewithcommunityneedsandresources.In2015ourclinicalteam,ledbyDrsKateThomsonBowe,GiulianaAntolovich,AdrienneHarveyandMsSachaPeterson,developedsystemsthatwillharnessthepotentialoftheelectronicmedicalrecordforensuringbestclinicalcareandbridgingadatagapthatexistsbetweenclinicalcareandresearch.
Allourresearchaimstominimiseimpairments,maximiseactivityandpromoteparticipationandwellbeingofchildrenwithdevelopmentaldisabilityandtheirfamilies.Manynewresearchcollaborationsandpartnershipshavebeenestablishedoverthepasttwoyears,addingskillsaswellasfinancialresourcestotheeffortsoftheteam.Wearealsoincreasinglyprovidingresearchtraining,toequipthefutureworkforcewithskillstoensureevidence-basedhealthcareandimportantdiscoveriesintheyearstocome.
Thisreporthighlightsachievementsoverthepasttwoyearsandpresentskeycurrentactivities.
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08 | OUR H IS TORY
OUR H IS TORY (CONT )
Neurodevelopmental differences
Disruptionordifferencesindevelopmentofthebrainorspinalcordcanresultinneurodevelopmentalproblems.Whenaneurodevelopmentaldisruptionordifferencecausesproblemswithactivities,functionorparticipationitiscalledaneurodevelopmentaldisability.Othertermsusedtodescribethistypeofproblemincludeneurodevelopmentaldisorders,intellectualdisabilityanddevelopmentaldisability.Todaywetalkaboutbroadcategoriesofdisability(Figure2)suchasthoseaffectingsocialcommunication,knownasautismspectrumdisorders,thoseaffectingphysicalability,suchascerebralpalsyandspinabifida,thoseaffectingintelligenceandthosewhichareknowntohavegeneticorneurologicalunderpinningsthatareoftenreferredtobythegeneticdefectorsyndromename,forexampleDownSyndromeorTrisomy21,orbrainmalformation,forexamplelissencephaly.Todaymorethan10%ofmalesand5%offemalesaged5-14yearshaveadisability.Morechildrenarebeingdiagnosedwithanautismspectrumdisorderthan10yearsago,andasimilarnumberofchildrentopreviouslyarebeingdiagnosedwithcerebralpalsyandotherdisabilities.
Figure 2. Differenttypesofdevelopmentaldisability
Astechnologyadvances,discoveriesarebeingmadethatwouldnothavebeenpossibleadecadeago.Wecannowconductwholeexomesequencingtoassessgenesrelativelyinexpensively,andwealsohavetheabilitytoexploreepigenetic(geneswitching)differences.Thismeanswearedevelopingwaystounderstandtheinteractionsbetweengenes,earlylifeenvironment(particularlyduringpregnancy)andneurologicaldevelopment.Wearealsoworkingtowardsunderstandinghowoptimalbraindevelopmentcanbedisrupted.Inthenottoodistantfuturewearelikelytohaveanewlanguagefordescribingneurodevelopmentalproblemsincludesthespecifictypeofgeneticchangeincombinationwiththeresultingneuroabnormality,whetherthatisstructural,cellularorneurochemicalintype.
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SOLVE@RCH | 0908 | OUR H IS TORY
Whilewemakediscoverieswemustnotlosesightoftheindividualswithneurodevelopmentalproblems.Evidenceisstillneededabouthowbesttodiagnose,intervene,provideinformationaboutthefutureandcollectinformationthatassistsservicedevelopmentandpolicy.TheInternationalClassificationofFunctioning,DisabilityandHealthprovidestherightapproachforassessingtheimportantinteractionsbetweenimpairments,functionandparticipationandthemanythingsthatinfluencethem.
TheNationalDisabilityInsuranceScheme(NDIS)providesanopportunitytoimplementcurrentbestpracticefordiagnosisandintervention,andtobebraveandcompareinterventionswhenbestpracticeisunclearordebated,sothatfuturegenerationsofchildrenwithdisabilitiesandtheirfamiliescanbenefit.Italsoprovidesaframeworktoengagefamiliesasclinicalandresearchpartners,andtoestablishsystemsandactivitiesformonitoringtheinterventionsthatareprovidedforchildrenandtheirfamiliestoassesstheoutcomesofpractices,servicedeliveryandpolicy.
Whilewemakediscoveriesandembracechangestoensurewearealwaysimprovingcare,servicesandpolicyforchildrenwithneurodevelopmentaldisabilitywemustalsoguardagainstfalselyelevatinghope,creatingunrealisticexpectationsorpromotinginterventionsthatcauseharm,forindividuals,theirfamilyandthecommunity.Wealsoneedtobereadytodebatethebenefitsandrisksofdiscoveringtheneurobiologicalunderpinningsofabilityanddisability.
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PeterWattshasalwaysbeenacontributor,amanwhopitchesinforthecommunalgood.Growingupinthecountry,helpingone’sneighbourwasacompletelynaturalthingtodoandthroughouthisyouthpitchingintomowaneighbour’slawnor
helponanearbyfarminatimeofneedwassecondnature.ThishasbeenaconsistentthemethroughouthislifeandaftermanyyearsasamemberoftheAustralianserviceclubApex,PeteracceptedaroleontheBoardoftheApexFoundationforResearchintoIntellectualDisability(AFRID).
Atthetime,AFRIDprovidedseedfundingtomultipleAustralianorganisationsandresearchersworkinginthefieldofdevelopmentalmedicine.PeterfirstmetProfessorDinahReddihoughAOthroughherroleontheAFRIDscientificsub-committeeresponsibleforevaluatingtheproposalssenttoApex/AFRIDforfunding.
Peterwasadamantaboutfindingawaytomakeagame-changingcontributiontoimprovingthequalityoflifeofchildrenwithdisabilitiesandtheirfamilies.
“Wereallywantedtomakeabigsplashinthepond,soIaskedDinahwhatweneededtodotocreateabreakthroughindevelopmentalmedicine,”hesays.
WithDinah’sassistance,AFRIDhostedaseminarataninternationalconferenceonintellectualdisabilitytodiscusswiththeconferenceguestsanddelegateshowbesttomakeuseofAFRID’sresources.ThroughthisitbecameabundantlycleartotheBoardofAFRIDthatinordertomaketheimpacttheywanted,theyshouldfocusontheremarkableresearchopportunitiesinAustraliaandconsidermakingonebigcontributiontosupportasignificantprojectinperpetuity.
“ThewholetimeDinahhadbeenassistingusbyreviewingthemanyapplicationsforAFRID’sseed
fundingshehadbeenalmostsilentaboutSolve@RCH,”Petersays.“Suchisherhumilityandprofessionalethics,shedidn’twanttoprioritiseherowninterests,givenherrolewithAFRIDasScientificAdviser.WhenwefinallylookedatSolve@RCHandtheworld-classresearchteamtheyhad,werealisedthatthiswaswhatwehadbeenlookingfor.”
In2011AFRIDmadethedecisiontofundTheApexAustraliaChairofDevelopmentalMedicineattheRCH.In2014AFRIDproposedtogiveallofitsaccumulatedfundstoSolve@RCH–andindoingsodissolveAFRID
–inordertoendowinperpetuityTheApexAustraliaChairofDevelopmentalMedicineattheRCH,apositionnowoccupiedbyProfessorKatrinaWilliams,aleaderinautismresearchandHeadofDevelopmentalMedicineattheRCH.
“WecouldhavehappilycontinuedwithourexistingprogramofprovidingseedfundinginsmalleramountstomultipleprojectsbutwehadsupremeconfidenceinSolve@RCH–wehadseentheresultstheyproduced,wehadseenthecalibreofpeopleontheAdvisoryPanelandhowPhDstudentswerelininguptobeinvolved.”
WhenthedecisiontofundtheChairinDevelopmentalMedicinewasmade,PeterjoinedtheAdvisoryPanelofSolve@RCHandstayedonasbotharepresentativeofAFRIDaswellasinhisownrighttocontributehisexpertiseasamarketingconsultant.
“I’moftheviewthatifyoucanmakeasplashinthepond,thenlet’sdoit.Ifyou’reassuccessfulasSolvehasbeenlocallyandinternationally,thenthatattractsothersuccess.Ourcontributiontothatprocessraisedtheprofileandotherpeoplejumpedonboard.ItjustneededsomeonetostartitoffandIamveryproudtohavebeenapartofthatprocess.”
10 | ADV I SORY PANE L MEMBER
P E TER WATTS
OUR SUPPORTERS (ADV I SORY PANE L MEMBER )
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10 | ADV I SORY PANE L MEMBER
Cooperisanoutgoing10-year-oldboywholovestotravel,fundraiseandsharehisloveofgoodfoodviahisInstagramaccountTheWheelFoodie,whichchroniclesthefoodadventuresofa10-year-oldwhousesawheelchairtoexplore.
Cooperalsohascerebralpalsy,whichwasdiagnosedthreedaysafterhewasborn.Aswithmanychildrenwithadevelopmentaldisability,Cooper’streatmentismulti-disciplinary.Heseesaphysiotherapistonceaweekatschoolandanoccupationaltherapist.CooperalsovisitsProfessorDinahReddihoughandDrAdrienneHarveyfromtheSolve@RCHteamtwiceyearlyandhasbeeninvolvedinoneofAdrienne’strialsontreatmentfordystonia.
Cooperandhisfamilyactivelyfocusontheintrinsicrewardsofanexternallyfocusedlifetogether.Remarkablymatureforhis10years,Cooperquippedthat“Christmasisaboutgivingandbeingtogetherasafamily”whenaskedabouthisChristmasbountywhenwemethimforthisinterview.Indeedthatattitudeinformshisapproachtolife–itistogetherthatheandhisfamilyexperiencetheworld,embracingalifeoftravelandsharedexperience,andtogethertheyapproachandovercomethehurdlesofhiscerebralpalsywithapositiveanddeeplybondedsharedpurpose.
Withassistancefromoccupationaltherapistsandphysiotherapists,theSmithfamilyarecommittedtoembracingandexperiencinglifetothefullest.Toovercomepooraccessibilityissuesinsouth-eastAsiathefamilyattachathirdwheeltothefrontoftheirmanualwheelchairsothatCoopercangoupanddowngutterswhenheistravelling.
Whenaccessibilitybecomestoochallenging,Cooper’smotherBronstepsintocarryCooper.OnarecentholidaytoEurope,BronleftthewheelchairatthedoorofAnneFrank’shouseinAmsterdamandcarriedCooperthrough.Heenjoyedtheexperiencebutjoked:“ThankgoodnessAnnedidn’thavecerebralpalsybecausethestairsaresosteepandthefloorsarecobblestone!”
Thisremarkableyoungmanhassomeimpressiveachievementstohisname.AfterresearchingCambodiainpreparationforarecentfamilyholidayCooperwasmovedbythepovertyexperiencedbychildrenthereandsethismindtoraisingmoneyforaCambodianschool.Morerecentlyin2015heraisedmorethan$1000withhistwoyoungersiblingsintheMurdochChildrensResearchInstituteStepathon.
Describingthefuntheysharedatarecentdisabledsurfingevent,Broncommentsthatshehasrecentlydetectedashiftintheirrelationshipasitmaturesfromaparent’sjourneywithachildwhohascerebralpalsytothatofayoungperson’sjourneygrowingupwithcerebralpalsy.
“Coopernowmakesthedecisionsonwhathewouldliketoparticipatein,”Bronsays.“Ioftenpointouteventsforfamiliesandchildrenwithadisability,butit’suptohimtochoosetoparticipateornot,andoftenhewillchoosemainstreamevents.”
Maintaininghisfocusonmaximisinghisparticipationinlife,Cooperhasbigplansfortheyearahead.HeisreadinguponJapanbeforeafamilyholidaythisyearandplanningthisyear’sfundraisingproject.
OUR FAM I L I ES | 11
COOPER SMITH AND BRON LEEKS
OUR FAM I L I ESOUR SUPPORTERS (ADV I SORY PANE L MEMBER )
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12 | OUR PEOP LE
D INAH REDD IHOUGH
OUR PEOP LE
FormorethanthreedecadespaediatricianProfessorDinahReddihoughAOhasbeeninvolvedintheclinicalcareofchildrenwithdisabilities,inparticularcerebralpalsy.AsDirectorofDevelopmentalMedicineattheRCHbetween1986-2011Dinahrecognisedanurgentneedtoraisetheprofileof
researchintochildhooddisability.
“Childhooddisabilityusedtobeinthebackroomofhospitals,andinthebackofpeople’sminds,”shesays.“Therewaslittleornoresearchbecausechildhooddisabilitywasseenasnot‘curable’andthereforewasnotviewedasessentialorurgentfromaresearchperspective.”
In1987DinahfoundedtheVictorianCerebralPalsyRegister,whichisnowoneofthelargestgeographically-definedcerebralpalsyregistersintheworld,holdinginformationonmorethan5200individualswithcerebralpalsy.
“Asaclinicianandresearcher,IknewthatalongitudinalrecordofinformationabouteverycaseofcerebralpalsyinVictoriasince1970wouldbeagoldmineforfocusingourresearcheffortsandadvancingourknowledge.Bycollectingthisinformationwecan,forexample,identifytrendsinincidence,causesandriskfactors,wecanmonitortheeffectivenessofinterventionsandkeeptrackofthechangingneedsofindividualswithcerebralpalsyastheyage.
“Ultimatelythegoalofcliniciansandresearchersindevelopmentalmedicineistosignificantlyimprovethequalityoflifeofeverychildbornwithadisability,andthecerebralpalsyregisterprovidesuswiththeinformationweneedtoprovidebetterlong-termhelpandsupportforchildren,theirfamiliesandthecommunitiesinwhichtheylive.”
Dinah’sexperiencealsohighlightedtheneedforacriticalmassofcompellingresearchaccompaniedbyapublicadvocacybodydedicatedtochildhooddisabilityanddevelopmentalmedicine.
Knowingtheprofoundimpactthatsmallpositivechangescanhavetothequalityoflifeofachildwithadisability,Dinahsethermindtocreatingthechangethatshewantedtosee:specificallyincreasedsupportandfundingforchildhooddisabilityresearchandresearchers.
“Childhooddisabilityisnotlikeanillnessthatcangetbetteroneday–it’slifelong.Thereissomuchthatcanbedonethough,notonlylookingatthecausesofdisabilitybutalsoimprovingqualityoflifeforthosewithadisability.”
In2004shegatheredagroupofinfluential,committedandawareindividualsfromtheMurdochChildrensResearchInstitute,theRCH,itsFoundationandauxiliaries,theUniversityofMelbourne,parentsofchildrenwithadisabilityandcommunityrepresentatives.ThisbecametheAdvisoryPanelofSolve@RCH,chairedbytheesteemedeconomistand,morerecently,pioneeroftheNationalDisabilityInsuranceSchemeBruceBonyhadyAM.
Inhertrademark,understatedmanner,DinahspeaksproudlyofthecollegiateefforttoraisetheprofileofresearchindevelopmentaldisabilitysincetheofficiallaunchofSolve@RCHin2006.
“Wecouldnothaveachievedanyofthisinisolation:researcherscouldn’thavedonewithouttheencouragementandsupportprovidedbytheSolveAdvisoryPanel,theauxiliariesandtheRCH,MCRIandtheRCHFoundation.Comingtogetherhasenabledustodomuchmorethanwecouldhavedoneonourown.
“ThesuccessofSolvecomesbacktotheimpressiveskill-setsofboththeAdvisoryPanelmembersandresearchers.Wehavesetupasystemthatoptimisesthepotentialforresearchbreak-throughsindevelopmentalmedicine.Theareaofimpactisuptotheresearchers’discretionbasedontheirexperienceofthechildrenandfamiliestheysee,whiletheAdvisoryPanelofSolveprovidesguidanceandastructureforfundraisingandpublicsupport.
“ThelocalandinternationalimpactofthegenerosityoftheApexFoundation,andmorerecentlyphilanthropistPamelaGalli,increatingourtwochairsofdevelopmentalmedicinecannotbeoverstated.Theirgenerosityandforesighthasallowedpaediatriciansandresearcherstoexpandtheirprograms,initiatepilotstudiesandbuildpowerfulimpetusbehindresearchinthisareatosupportotherfundingapplications.”
Whilemuchhasbeenachievedin10yearsbySolve@RCH,Dinahemphasisesthatthereisstillalongwaytogo:“Weworkforsmallchanges.ThethingsthatkeepmegoingarethefamiliesandchildrenIworkwith.Whileoftencopingwithseveredisabilitiesandsetbacks,theyarewithoutfailresilient,optimisticandoftenverybrave.Theyarewhywestaycommitted.”
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OUR PEOP LE | 1312 | OUR PEOP LE
DrAdrienneHarvey’stransformativeresearchintodystoniainchildrenwithcerebralpalsyissupportedbySolve@RCH.AdriennetrainedasaphysiotherapistandisworkingasaclinicalresearcherinDevelopmentalMedicineatthe
RCH.In2015shewasawardedaMelbourneChildren’sCampusCareerDevelopmentAward,whichallowshertofocusonherresearchintodystoniaalongsideherroleinDevelopmentalMedicine.
Dystoniaisamovementdisordercharacterisedbyinvoluntarymusclecontractionsthatcancausethechildpainanddistressandinterferewiththeirfunctionandqualityoflife.
“It’samovementdisorderthatwehavereallyonlyrecognisedaccuratelyinthelast10years,”Adriennesays.“Inthepastinvoluntarymusclespasmswereoftenclassifiedasatypeofspasticity,butonlyrecentlyhavewerealisedthatdystoniabehavesquitedifferently:itishardertoidentifyandmanageeffectivelyandcangetworseasthechildrengrow.”
Detectingandmeasuringdystoniainchildrenwithcerebralpalsyhasimprovedoverthepast10yearsbutnobreakthroughshavebeenmadeintreatment.
Adrienneexplains:“Theoralmedicationsthatarecurrentlyavailableoftenhavenastyside-effects,ortheireffectivenessvaries.Researchintotreatmentisparticularlychallengingbecauseeachchildpresentsdifferentlyandwillhavevaryingassociatedproblems,sotheywillresponddifferentlytotherangeofdrugsavailable.”
Forthesereasonsthereisstillacriticalgapintheresearchontreatingdystonia.Trialsareparticularlydifficulttoconductinthispopulationandevidenceabouttheusefulnessofdrugsisscarce.
“Thechildrenandtheirfamiliesarefantastictoworkwithandarealwayshappytoparticipateinresearch,butitcanbehardtoattractfundingforthistypeofresearch,”Adriennesays.“Solve@RCHhelpsustodrive
thisreallyimportantresearchagendaandcoordinateourquesttosecurefundingforit.”
Adrienne’scurrentresearchisfocusedonensuringconsistentmeasurementofdystonia,usingvalidatedtoolstoassessnotonlytheinvoluntarymusclemovementsbutalsotheirimpactonthechild’sfunctionandqualityoflife.Sheisalsoinvestigatingtheeffectivenessofthecurrentlyavailablemedicationsusedbydoctorstotreatdystoniainchildrenwithcerebralpalsy.
“Solve@RCHisnotonlyabodythatdrivesfundraisingeffortstosupportongoingresearch,butitalsoactsasanadvisorygroupofestablishedpractitionersandindividualsfromarangeofdifferentbackgroundsthatcanevaluateanddirecttheresearchoncefundingissecured.
“Themulti-disciplinaryreachofSolve@RCHisintegraltosuccessfullytacklingissuesthatrequireamulti-disciplinaryresponse.Someofmyresearchisaroundmedicationsandtheireffectsandside-effects.Thisisobviouslynottraditionallyatypicalphysiotherapytopic.HoweverIworkwiththepharmacistsanddoctorswhohavethenecessarymedicationexpertiseandmyskillsareindesigningthestudies,measuringtheoutcomesandoverseeingtheresearchprocess.Inthefieldofdisabilityresearchit’sverymuchateamapproachandyouhavetoapproachquestionscollaborativelyforbestresults.”
ForthenextthreeyearsAdriennewillcontinueherresearchindystoniaaspartoftheNHMRCCentreofResearchExcellenceinCerebralPalsygrant,collaboratingwithresearchersinAustraliaandinternationally.
“Whatinspiresmetokeepgoingisseeingthechildrenbenefitandimprovefromourmanagementandseeingthemparticipatefullyineverydaylife.Wecan’tcurecerebralpalsybutwecancertainlyhelptomakethelivesofchildrenandtheirfamiliesasenjoyableaspossible.Forme,whatIloveseeingiskidsandtheirlovedonesabletodowhattheywanttodoasafamilyandasindividuals.”
ADRIENNE HARVEY
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THE V ICTOR IAN CEREBRA L PA LSY REG ISTER ( VCPR )Cerebralpalsyistheumbrellatermusedtodescribechildrenwhohaveongoingproblemswiththeirmovementsand/orpostureasaconsequenceofdisturbancetothebrainbefore,duringorsoonafterbirth.Themovementproblemlimitstheabilitytoperformactivitiesofdailylivingandmaybeaccompaniedbyadditionaldisordersandimpairmentssuchasepilepsy,sensoryimpairments,intellectualdisability,communicationdifficultiesandsecondarymuscleandjointproblems.
TheVCPRisthecornerstoneformuchofthecerebralpalsyresearchperformedinVictoria.Itisaninvaluableresourcefordescribingtrendsinprevalence,healthserviceuse,survivalandclinicalcharacteristicsofindividualswithcerebralpalsyintheVictorianpopulation,andfacilitatesimportantresearchinvestigatingthecausesofcerebralpalsyandstrategiesforachievingthebestoutcomesforindividualswithcerebralpalsyandtheirfamilies.
Attheendof2015therewere5367individualsbornafter1970whowereregisteredontheVCPR,representingmorethan100newdiagnosesperyear.Overnearly30years,theVCPRhasbeeninvolvedin83separateresearchprojects,asaresultofwhich91papershavebeenpublishedinpeer-reviewedjournals.TheVCPRalsocontinuestocontributeVictoriandatatotheAustralianCerebralPalsyRegister,whichisduetopublishitsnextreportin2016.
V ICTOR IAN PRADER -WI L L I SYNDROME REG ISTER ( V PWSR )Firstdescribedin1956,Prader-Willisyndromeistheresultofageneticdefectaffectingimprintedgenesonchromosome15atq11–13.Thesyndromeischaracterisedbyfloppinessandfailuretothriveinthenewbornperiod,intellectualdisability,specificbehaviouralproblems,excessiveorrapidweightgain
duringchildhoodandincreasedappetitethatoftenleadstoobesity.TheVPWSRisanidealresearchplatformforansweringquestionsthatareimportanttocliniciansandresearchers,aswellastoindividualswithPWSandtheirfamilies.Itsaimsincludeimprovingourunderstandingoftheincidence,morbidityandmortalityofPrader-WilliSyndrome.
TheVPWSRcollectsandstoresinformationaboutindividualswithPrader-Willisyndromewhowereborn,livingand/orreceivingservicesinVictoria.Attheendof2015,therewere202individualsknowntotheVPWSR,withagesrangingfrom0-65years.Todate,theresultsoftwopopulation-basedstudieshavebeenpublishedandpresentedinternationally,andtwoadditionalpublicationshaveusedVPWSRdata.Morethanone-thirdoffamilieshaveconsentedtoreceivethree-yearlyquestionnaires,toallowanunderstandingofhowhealthandwellbeingchangeovertime.ThereisgrowinginterestfromresearchersandparentsintheVPWSRasameansoffacilitatingresearchandalsointhedevelopmentofanationalPrader-Willisyndromedatabase.
V ICTOR IAN NEURA L TUBE DEFECTS REG ISTER ( VNTDR ) Neuraltubedefects(NTDs)arecausedbyincompleteformationofthespinalcordandoverlyingtissuesduringthefirst28daysofpregnancy.Arelatedbirthdefect,sacralagenesis(absenceormalformationinthedevelopmentofthesacrumorcaudalportionofthespine),hasneuropathicsequelaethatoverlapsignificantlywiththecommonestNTD.Spinabifidaoccultadoesnotcauseneurologicalimpairmentsandisnotincludedintheregister.
TheseverityofNTDsandtheeffecttheyhaveoneachchildvarieswidely.Mostchildrenhavemuscleweaknessimpairingmobility,bladderandbowelabnormalitiesimpairingcontinence,andlearningdifficulties,particularlythoseassociatedwithorganisationandmemory.Allofthesearelikelyto
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affectthelevelofindependenceandself-care.
Thecomplexityoftheseconditionsmeansthatthehealthcareofachild(andadult)withaNTDorsacralagenesisrequiresamultidisciplinaryteamofspecialists,includingpaediatricians,urologists,neurosurgeons,orthopaedicsurgeons,continencenurses,orthotists,physiotherapists,occupationaltherapists,psychologistsandsocialworkers.
TheaimofthisprojectistoestablisharegistryofchildrenattendingtheRCHservicethatwillallowustobetterunderstandthemedical,educationalandsocialneedsofthispopulation.ItisenvisionedthattheVNTDRwillbeexpandedatalaterstagetobecomeastate-wideregistryforchildrenandadults,collaboratingwithourMonashMedicalCentrecolleagues.Threelevelsofparticipationarepossible:
1)ascertainmenttocaptureprevalenceandtypeoflesion;
2)gatheringofclinicalinformationforthedurationofcareofthechildatRCH;and
3)consentforinvitationtojoinfuturerelevantethics-approvedresearch.
OnehundredandeightychildrenandyoungpeoplewhohaveattendedtheRCHinthepast10yearshavebeenascertained.Todate,58familieshavebeeninformedabouttheVNTDRanddataentryisnowcompletefornearlyhalfofthem(26).
Throughtheregisterwewillbeabletoimproveourunderstandingofriskandprotectivefactorsforoutcomesandinitiatestudiesofinterventions.Thiswillaidthedevelopmentofguidelinestoimproveclinicalcareandhealth,participationandwellbeing.
THE ME LTON DEVE LOPMENTAL D I F F ERENCES DATABASE (M3D )
Developmentaldifferencescreateconcernforparentsandoftenresultinthemseekingadvice.Ifadifferencepersiststhenmultidisciplinaryassessmentisneededto
identifyimportantdiagnosesandtobetterunderstandstrengthsanddifficulties,sothatadditionalsupportcanbeprovidedasneeded.Despitemanyadvancesinourunderstandingofneurodevelopment,muchisstillnotknownabouttheoccurrenceoftypesofdevelopmentaldifferences,theirassociationsandtheiroutcomes.
M3DisaninitiativefromcollaborativepartnersacrossDjerriwarrhHealthServices,TheRoyalChildren’sHospital,theUniversityofMelbourneandtheMurdochChildrensResearchInstitute.Thiscollaborationwasestablishedinrecentyearswhenteammembersidentifiedtheneedforacomprehensivedatabasethatcansupportcurrentandfutureresearchactivitiesandinformclinicalpracticefordevelopmentaldifferencesanddisability.
TheaimoftheM3Distoprovideapopulation-basedresearchplatformthatcanhelpresearchersinvestigateprevalence,characteristics,potentialcausesanddevelopmentalpathwaysofchildrenwithdevelopmentaldifferencesanddisabilitieslivingintheMeltonregionofVictoria.TheM3DwillhouseinformationrelatingtochildrenandfamilieswhohavehadadevelopmentalassessmentcompletedbytheAutismSpectrumAssessmentClinicandtheDevelopmentalAssessmentClinicatDjerriwarrhHealthServices.EthicalapprovalwasobtainedforM3Din2015,andworkhasbeguntoestablishacoredatasetandprovideinformationaboutthedevelopmentofM3Dtoeligibleparticipants.ThedatabasewillbemanagedbytheAutismResearchTeam,andwillbehousedattheMurdochChildrensResearchInstitute.
Itisanticipatedthatin2016datarelatingtomorethan200childrenwithvaryingdevelopmentaldifferenceswillbeincludedinM3D.Toourknowledge,nosuchdatabaseexistsinaregionwherefamiliesofchildrenwithdevelopmentaldifficultiestypicallyaccessasingle,unifiedassessmentservice.Assuch,M3Dprovidesauniqueopportunitytotrackanentirepopulationofchildrenwithdevelopmentaldifferenceswithinadefinedgeographicalarea.
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TheCRE-CPisafive-year,NHMRC-fundedprojectthatbringstogetherleadingresearchers,cliniciansandconsumersfromacrossAustraliaandtheglobe.TheCRE-CPaimstoimprovethephysical,mental,socialandemotionalhealthandwellbeingofchildrenwithcerebralpalsyandtheirfamilies.Nowinitsthirdyear,theCRE-CPcontinuestoworkcloselywithresearchers,cliniciansandfamiliesinanefforttobringaboutchangeinthemanagementandtreatmentofcerebralpalsy.
TheCRE-CPteamconsistsofacollaborativegroupofclinicians,researchers,studentsandfamiliesthatallworktogethertoachievetheCRE-CP’saims.PartnersincludetheMurdochChildrensResearchInstitute,theRCH,theUniversityofMelbourne,AustralianCatholicUniversity,theCerebralPalsyAlliance,DeakinUniversity,theUniversityofSydney,theTelethonKidsInstituteandWesternAustralia’sDepartmentofHealth.
CENTRE FOR RESEARCH EXCEL LENCE IN CEREBRAL PALSY (CRE -CP )
Allied Health
RCT:Dorigidupperlimborthosespreventorreducethedevelopmentofhandandwrist
contracture?
Studiesevaluatingtheeffectivenessofcommon
treatmentsforsalivacontrolproblems
Implementationofaformal,state-widehipsurveillanceprogramforchildrenwith
cerebralpalsy
Bikeridingabilityinchildrenwithcerebralpalsycomparedtotypicallydevelopingpeers
Medical & Surgical Interventions
Aresearchprogramonmanagingdyskinesiain
childrenwithcerebralpalsy
RCTevaluatingsofttissuesurgeryversusbonysurgeryinthe
managementofdisplacedhips
Mental Health & Participation
Developmentofanewqualityoflifemeasurementtools;
forchildrenandforparentsandcarers
Improveoutcomesandsupportavailableformothersofchildrenwithdisability
Aresearchprogramdesignedtohelpyoungadultsachievetheirpersonalandcommunity
aspirations
Overfiveyears,themulti-facetedresearchprogramwillincludearangeofclinicaltrials,systematicreviewsandtrainingopportunities,leadingtotheimplementationofevidence-basedcare.
Figure 3.ResearchstreamsoftheCRE-CP
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Research Projects
ThemanystudiesunderwayareshowninFigure3.Ourtwoclinicaltrialsareactivelyrecruitingchildren,oneonupper-limborthosesandtheotheronsurgicalmanagementofdisplacedhips.Anadvisorycommitteeofclinicians,researchersandparentshasbeenestablishedtoleadthedyskinesiaresearchprogram,andthehipsurveillanceprojectisprogressing(seedetailspage19).WehaveappointedfivePhDstudents,studyingattheUniversityofMelbourne,DeakinUniversity,andtheAustralianCatholicUniversity,whoareworkingonprojectsinqualityoflife;creatingnewmeasurements,updatingexistingtoolsandevaluatingmeasuresusedinhealtheconomicsrelatedtodisability;andsalivacontrol.
Education and Events
OneofthemainaimsoftheCRE-CPistoprovideaneducationprogramthroughseminars,fact-sheets,publications,podcastsandvideosinaformatthatfamiliesandhealthprofessionalscanaccess.Therehavebeentwokeyeventsoverthepast24months.
Thefirst,calledPathwaystoPossibilities,wastheinauguralsymposiumoftheCRE-CP,heldinMelbourneon4MayandinPerthon8May2015.ProfessorDarcyFehlingsfromBloorviewChildren’sHospitalinCanadaandlocalspeakersdeliveredaprogramcentredonevidence-basedbestpracticethatwillultimatelyimprovethehealthandwellbeingofchildrenwithcerebralpalsyandtheirfamilies.Feedbackincludedquotessuchasthisone:“Fantasticeventandlearntsomeveryvaluableinformationregardingdystoniathatwillassistmeintheclinicalsetting.Feltveryprivilegedtolistentosuchknowledgeablespeakers.”
ThesecondwasthefirstCPFACTSseminar,afreehalf-dayfamilyeventdesignedtoprovideinformationrelatedtocerebralpalsythroughpresentations
andexhibits,withtimeforquestionsandone-on-oneconversations.Childrenofparticipantparentsweresupervisedbyvolunteersandparticipatedinarangeofgamesandactivities.Theseminarwasagreatsuccess,withfeedbackincluding“Iwasveryimpressedwiththestructureandcontentofthesession.Itwastotallyrelevanttooursituation.Itwasamazingtogetinformationina‘onestopshop’!”.ItisplannedtoholdCPFACTSannually.
Summary
TheCRE-CPteamlooksforwardtocontinuingthesuccessofthepasttwoyearsandhasplansinplaceforanumberofinitiativeswhichwillcontributetoincreasingknowledgeinthefieldanddevelopingthenextgenerationofresearchersandclinicians.Theseincludealeadershipprogramforresearchers,anumberofknowledgetransferfellowshipstofacilitatetheapplicationofevidence-basedknowledge,andincreasedsupportofPhDstudentsthroughacountry-widetop-upscholarshipscheme.Excitingthingstolookforwardto!
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PREVALENCE CEREBRA L PA LSY Temporaltrendsintheprevalenceandseverityofcerebralpalsynotonlyaffordinsightintochangingclinicalandhealthservicedeliveryneedsbutarealsovaluablemarkersformonitoringtheimpactofinnovationsinperinatalpracticeandtheeffectivenessoftreatmentsaimedatprotectingthebrainsofnewborninfants.InastudyusingdatafromtheVictorianCerebralPalsyRegisterforbirthyears1983-2009,researchersfromDevelopmentalDisabilityandRehabilitationResearchassessedtrendsintheratesofcerebralpalsyofdifferentlevelsofseveritywithinbirthgestationgroups.Theyestablishedthattherateofcerebralpalsyininfantsbornatallbirthgestationsrosethroughoutthe1980sandearly1990sbutdeclinedthroughthelatterhalfofthe1990sand2000s.Thedatasuggestedrelativelygreaterdeclinesincerebralpalsyratesoverthestudyperiodforthemoreseverelyaffectedand/orcomplexsubgroups.Thesedeclinesintheratesofcerebralpalsyofalllevelsofseverityandcomplexityfromthemid-1990sprovidesupportfortheeffectivenessofcontinualinnovationinperinatalpractices.Afurtherstudyexploringtheeffectsofgenderoncerebralpalsyprevalencefoundthatthetemporalchangesweregender-dependent.Pretermmalesshowedmoredramaticchangesovertimeincerebralpalsyratesthanpretermfemales,butweobservedlittlechangeintheoverallmale:femaleratio.
Tworecentpublicationsandfiveinternationalandnationalpresentationshaveresultedfromthisresearch.
AUT I SM SPECTRUM D ISORDERUsingpopulation-baseddatafromtheLongitudinalStudyofAustralianChildren,theAutismResearchTeampublishedanimportantpaperintheAustralianandNewZealandJournalofPsychiatrywhichreported
anincreasedprevalenceofautismspectrumdisorderinAustralia.Theresearchfound2.5%ofchildrenunder7yearsofagehadanautismspectrumdisorderdiagnosis,anincreasefrom1.5%foundfouryearsearlierintheoldercohort.Thisresearchwasabletoutilisethetwo-cohortdesignofthestudytocommentonpossibleassociationswithgovernmentfundingthatwasavailableforchildrenwithautismintheyoungerbutnottheoldercohort.Thisworkwillbecontinuedwithintheteaminthecomingyeartofurtherexploretheprevalenceaswellascausesofautismusinglaterwavesofdata.
CAUSEWHAT CAN WE L EARN FROM TWINS?Itispossiblethatepigeneticscouldplayaroleinneurodevelopmentaldifferences,includingthedevelopmentofcerebralpalsyandautismspectrumdisorders.Epigenescontrolgeneactivityandtheiractioncanbeinfluencedbytheenvironment.
Althoughcerebralpalsymayoriginatebeforebirth,diagnosisisoftendelayed.Weproposethat“epigenetic”geneswitchesknowntobeinfluencedbytheenvironmentinthewomborduringthefirstfewdaysoflifehavethepotentialtobeusedtoidentifywhichbabieswilldevelopcerebralpalsy.Earlyidentificationwouldpavethewayforimmediateinterventionsthatmightamelioratethesymptomsofthiscondition.Wearestudyingagroupofidenticaltwinpairs,eachofwhichisdiscordantforcerebralpalsy,tohelpusfocusondifferenceswithintwinpairsintheirearlyenvironmentalexperiencesratherthanongenetics,sincetheidenticaltwinsaregeneticallythesame.Wehaveanalyseddriedbloodsamplestakenatbirthandarecontinuingtoexplorewaystotakethisresearchtothenextlevel.
Autismspectrumdisorderisacomplexdevelopmentaldisordercharacterisedbysocialcommunication
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problemsandrestricted,repetitivepatternsofbehaviour.Thereisstillmuchtobelearntaboutmechanismsthatareonthecausalpathwaytoautismspectrumdisorder.Twinstudiesthatcontrolforvariabilityassociatedwithgenesandsharedenvironmentsareparticularlyvaluableinexaminingfactorsthatmaybeimportantindisorderdevelopment.IntheUNIQUEAutismresearchproject,weareexaminingsimilaritiesanddifferencesbetweenidenticaltwinswhereoneorbothchildrenhaveautismspectrumdisorder.Wearelookingatbothbehaviourandgenetics,withaparticularinterestin“epigenetic”geneswitches.Thedetailedexaminationofbehaviour,cognitionandfunctioningofeachchild,coupledwiththeepigeneticanalysis,makesthisstudyunique.Wehavehadfivesetsoftwinpairsparticipatetodate,andarefindingthatevenwhenbothtwinshaveadiagnosisofautismspectrumdisorder,theirthinkingskills,behaviourandfunctioningareoftendifferentinimportantways.Inthefuture,wewillbeseekingfundingtoexpandthestudytoincludesequencingofalltheDNA(“wholegenomesequencing”)foreachpairofidenticaltwinstocheckforgeneticdifferences,asasmallnumberofrecentstudieshavefoundthateven“identical”twinssometimeshavedifferencesintheirDNAcode.Suchdifferencescouldworktogetherwiththeepigeneticdifferencestocontributetothedevelopmentofautismspectrumdisorder.
WHAT ARE WE L EARN ING FROM MAGNET IC RESONANCE IMAGING F IND INGS?Formanyfamilies,thecauseoftheirchild’scerebralpalsyisnotwellunderstood.Withimprovementsinbrainimaging,however,moreisknownaboutthetypeofbraininjurythathasoccurred,evenifthereasonsfortheinitialinjuryremainunrecognised,especiallyinchildrenwhohavenosymptomsinthenewbornperiod.AprogramofresearchisbeingundertakenwithintheDevelopmentalDisabilityandRehabilitationResearchgrouptoclassifythemainpatternsofbrain
injuryseeninchildrenwithcerebralpalsyandtobetterunderstandhowthepatternsofinjuryrelatetoclinicalprofiles.UsingthisknowledgeanddataheldontheVictorianCerebralPalsyRegister,weareexploringcausalpathwaystocerebralpalsywithingroupsofchildrenwhohavesimilartypesofbraininjuries.Mothershavebeeninvitedtoparticipateinthisstudybycompletingaquestionnaireabouttheirhealthandpregnancyandthebirthandearlylifeoftheirchild.Thisresearchhasresultedinfivepublicationsoverthepasttwoyears,andmorepapersareinpreparation.
I DENT I F ICAT ION AND D IAGNOS IS H I P SURVE I L LANCETheCRE-CPhipsurveillanceprojectaimstodevelopandimplementaframeworkforhipsurveillanceforallVictorianchildrenwithcerebralpalsythatisefficient,sustainableandwellacceptedbybothfamiliesandhealthprofessionals.Thefirststephasbeentoexplorethecurrentbarrierstoeffectivehipsurveillancewithtwostudies.AsurveyofVictorianhealthprofessionalswasconductedtoassessthecurrentstateofpracticeofhipsurveillanceandtoexplorethebarriersandfacilitatorsencounteredbyhealthprofessionalsinimplementingroutinehipsurveillance.Resultsofthissurveyarebeinganalysed.Thesecondstudyinvolvesparentsandcarersofchildrenwithcerebralpalsyparticipatingingroupdiscussionstoexploreparentperspectivesofhipsurveillance.Thesefocusgroupsarecontinuing.
Inaddition,theteamhasdevelopedaknowledgetranslationandstakeholderengagementplan,consultedwithserviceprovidersregardingatechnologicalframeworkforimplementationofthehipsurveillanceprogramanddisseminatedcurrentresearchandbestpracticethroughpresentationstokeystakeholdergroups.
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PAED IATR IC PRACT ICES WHEN D IAGNOS ING AUT I SM SPECTRUM D ISORDERSAmulti-topicsurveywasusedtoexploreautismdiagnosticpracticesofpaediatricians.ThisstudyhighlightedalackofconsistencyofpracticeinAustraliaandfoundthatdiagnosticprocessesoftenfallshortofrecommendedpractice.Whilemostpaediatriciansspentconsiderabletimemakingadiagnosisofautismspectrumdisorderandusedrecognisedclassificationsystems,theydidnotalwayshaverelevantassessmentinformationavailableatthetimeofdiagnosis,suchascognitive,developmentalandspeechpathologyassessments.Geneticandaudiologyassessmentswerealsonotalwaysordered.Therewereanumberofreasonsgivenbypaediatriciansastowhytestswerenotordered,includingout-of-pocketcostsforassessment,lackoflocalservicesandlongwaitinglists.Suchbarrierswillneedtobeaddressedtooptimiseaccuratediagnoses,identifychildren’sstrengthsandtoplanthebestpossibleservicesforallchildren.ThisworkwaspublishedinJanuary2016.
PROGNOS ISLONGITUD INAL FOL LOW-UP OF CH I LDREN WITH AUT I SM SPECTRUM D ISORDER AGED 10 AND 15Whiletheclinicalfeaturesofautismspectrumdisorderhavebeencontinuallyinvestigatedsincethetermwasfirstdescribedintheearly1900s,relativelylittleisknownabouttheprognosisandlong-termoutcomes.In2015,ethicalapprovalwasobtainedtoinvestigateclinicalfeaturesandlevelsoffunctioninginyoungpeopleaged10and15,whereapreviousdiagnosisofautismspectrumdisorderhadbeenmadebeforeoratthetimeofschoolentry.Inparticular,languageabilities,cognitionandsymptomseveritywillbe
exploredandcomparedtoparticipants’characteristicsatthetimeofdiagnosis.FundingfromthePerpetualTrustandtheRCHFoundationissupportingtherecruitmentandassessmentofparticipants,underwaysincelate2015.
INTERVENT ION STUD IES MENTAL HEA LTH CARE FOR MOTHERS OF CH I LDREN WITH A D I SAB I L I T YInterviewsandsurveyshavebeenheldwithmothersandhealthprofessionalstoaskabouttheirexperienceswithmentalhealth,andwhatchangetheywouldliketoseeinhealthanddisabilityservices.Thiswillprovidemuch-neededinformationaboutwhatchangesarerequiredtomakementalhealthcaremoreaccessibletomotherswhomostneedsupport,andwhatsystemsofpreventionandearlydetectionofpoormentalhealthcanbeimplemented,withtheaimofreducingthenumberofmotherswhoexperiencepoormentalhealthoutcomes.
‘ FAB T R IA L’ - F LUOXET INE FOR THE T REATMENT OF AUT I S T IC BEHAV IOURSOverthepastdecade,theuseoffluoxetineandotherselectiveserotoninreuptakeinhibitors(SSRIs)fortreatingchildrenandadolescentswithautismspectrumdisorderhasincreased,butthesafetyandeffectivenessoftheiruseisstillunknown.Thisrandomisedcontrolledstudyaimstoassess:
1)thesafetyandeffectivenessoffluoxetine,forreducingthefrequencyandseverityofrepetitivebehavioursinchildrenandadolescentswithautismspectrumdisorder;and
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2)whetherarelationshipexistsbetweenanindividual’sserotonintransportergenotypeandresponsetotreatmentwithfluoxetine.
Todate,143participantshavebeenrecruited;122havebeenrandomisedtoreceivefluoxetinemedicationorplacebo,33participantshavewithdrawnand18arecurrentlyinthetrial.Thestudyrunsacrossthreesites:theRCH,Victoria,theChildren’sHospitalatWestmead,NewSouthWalesandtheStateChildDevelopmentCentre,WesternAustralia.Findingsfromthistrialwillbeincorporatedintoguidanceaboutappropriateuseoffluoxetineforchildrenwithautismspectrumdisorder.
STEM CE L L SStemcellshaveprovokedconsiderableinterestasapotentialtherapyforcerebralpalsybutresearchregardingthesafetyandeffectivenessofthesecellsisverylimited.AnAustraliancollaborationhasbeenestablishedtoundertakeresearchinthisarea,headedupbyourresearchteam.Followingalongperiodofdeliberationastothebestwayforward,asmallpilotstudyinvolving12childrenagedbetweenoneand12yearsbeganinFebruary2016.Themainpurposeofthisstudywillbetoevaluatethesafetyofsiblingstemcelltransfusion.Familieswithachildwithcerebralpalsyandsiblingstoredcordbloodcellswillbeinvitedtoparticipate.Thechildrenwillreceivedetailedclinicalassessmentsbothbeforeandaftertheinfusion.Iftheprocedureisfoundtobesafe,thenthispilotresearchwillformthebasisforalargerstudytoassesseffectivenessinimprovingmovement,functionandparticipation.
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22 | PHD PRO JECTS
Amanda Brignell (Language trajectories and outcomes in autism spectrum disorders)
Amandaisstudyingtrajectoriesofcommunicationdevelopmentandpredictorsofcommunicationoutcomesinchildrenwithautismspectrumdisorder.Sheiscompletingasystematicreviewoflanguageoutcomesinautismspectrumdisorderandusingdatafromalargepopulation-basedlongitudinalstudy:theEarlyLanguageinVictoriaStudy.
Elaine Meehan (Health service use by children and young people with cerebral palsy)
Elaine’sPhDisinvestigatingtheuseofmedicalservicesamongchildrenandyoungpeoplewithcerebralpalsyusingdatalinkagetechniques.Specifically,sheisinvestigatingthepatternsofuseofhospitalemergencydepartmentandinpatientservicesinchildrenandyoungpeoplewithcerebralpalsybylinkingtheVictorianCerebralPalsyRegistrytostate-widehealthservicedatasets.Theavailabilityofpopulation-baseddataonmedicalserviceuseinthispopulationisimportantgiventhatcerebralpalsyisthemostcommoncauseofphysicaldisabilityinchildren,andtheneedformedicalcareinthisgroupremainshighthroughoutchildhoodandadolescenceandintoadulthood.Abetterunderstandingofhowmedicalservicesareusedwillprovideanobjectivebasisforserviceplanning.
Francesca Lami (The relationship between neuropsychological function and participation in ASD)
Autismspectrumdisorderisadevelopmentaldisordercharacterisedbyimpairmentinsocio-communicationandpresenceofrepetitivebehavioursandrestrictedinterests,toanextentthatthesesignificantlyimpacteverydayfunctioning.Francesca’sPhDwillexplorefactorsassociatedwithbetterparticipationandqualityoflifeincognitivelyableadolescentswithautismspectrumdisorder.Tounderstandthisrelationship,shewillbelookattherelationshipbetweenneuropsychologicalfunctioning,autismspectrumdisorderdomain-relatedbehaviours,socialparticipationandadaptivefunctioning.
Monica Cooper (Epilepsies in children with cerebral palsy)
Monicaisexploringthefrequencies,typesandevolutionofepilepsiesinchildrenwithcerebralpalsyandwhite-matterinjury(bornbetween1999and2006).Theneuroimages,patienthistoriesandelectroencephalograms(EEGs)willbereviewed.Thishasimplicationsfortreatmentoptionsforepilepsyassociatedwithcerebralpalsy,bothtypeofdrugandlengthoftreatment,andcounselling.Monicawillalsoreviewinformationaboutchildrenbornbetween1999and2006withcerebralpalsy(withwhite-matterinjury/grey-matterinjury/stroke)whohavehadinfantilespasms,toassesstheiroutcomesatfollow-upandtoidentifyriskfactorsforthisgroup.
HIGHLIGHTING CURRENT PHD PROJECTS CO-SUPERVISED BY OUR STAFF (enrolled for some
or all of 2014-2015)
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Rachel Toovey (Motor learning in children with cerebral palsy)
Rachelisexploringmotorlearninginchildrenwithcerebralpalsywithafocusontheskilloflearningtorideatwo-wheelbike.Bike-ridingisacommonchildhoodmilestone,yetalowerproportionofchildrenwithcerebralpalsywhocanwalkindependentlyareabletorideabikeindependently,comparedtotheirtypicallydevelopingpeers.Rachel’sPhDwillexaminethecurrentevidencebaseformotorlearningapproachesandapplythesefindingstoaninterventionstudyexploringtheeffectsofbike-skillsprogramsinthispopulation.
Rebecca Mitchell (Developmental outcomes of tuberous sclerosis complex)
Rebeccaisinvestigatingautismspectrumdisorderinchildrenwithageneticconditioncalledtuberoussclerosiscomplex.Themajoraimsaretouncoverneurobiologicalpathwaysthatleadtothehighratesofautismspectrumdisorderandotherneurodevelopmentalproblemsinthisgroupofchildrenandtobetterunderstandthe“type”ofautismspectrumdisordertheyhave.Thiswillenableclinicianstobettertargetmedicaltreatmentstoimprovedevelopmentaloutcomesandpromotebetterdevelopmentalcareforthesechildren.Itisalsohopedthatinsightswillbegainedintotheunderlyingcausesofautismspectrumdisordermoregenerally.
Susan Woolfenden (Developmental vulnerability and its underpinnings)
Susaninvestigatedinequitiesintheprevalenceofdevelopmentalvulnerability,associatedriskfactorsandtheirinteractions,andexploredfactorsthatinfluence
accesstoearlyidentificationandintervention.Shefoundinequitiesindevelopmentalvulnerabilitiesdrivenbydifferentialrisk,knowledge,qualityandaccessthatallneedtobeaddressedifriskofdevelopmentalvulnerabilityistobeminimisedandinequitiesovercome.PhDsubmittedin2015,currentlybeingexamined.
Neda Taghizadeh (Anaesthetic preparation for children with autism spectrum disorder)
Nedaisexploringtheexperiencesoffamilieswithachildwithanautismspectrumdisorderwhentheyattendforaprocedureundergeneralanaesthesia,existingevidenceaboutbestpracticeforpreoperativecareanddevelopingatrialofpremedicationtoassesswhichapproachesandagentsaremosteffective.
Sacha Petersen (Bedtime stories: An exploratory study of sleep disturbance for children with cerebral palsy and their parents)
Childrenwithcerebralpalsy(CP)andtheirparentscommonlyreportpoorsleep.TheprimaryaimofthisPhDstudyistounderstandthereasonsforandtheimpactofsleepdisturbanceforchildrenwithCPandtheirparents.Theinformationgeneratedbythisstudymayinformafutureevidence-basedinterventiontoaddresssleepissuesforchildrenwithCP.Thisproject,throughaconsumerinformedunderstandingofsleepissues,willaddressasignificantgapinevidence;therearenopublishedstudiesexploringaninterventionofthiskind.TheresearchhypothesisisthatsomeofthesleepdisturbanceexperiencedbychildrenwithCPmaybecausedbytreatablecareandcomfortfactorsassociatedwiththecomorbiditiesofcerebralpalsy.
22 | PHD PRO JECTS PHD PRO JECTS | 23
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 25 18/05/2016 3:41 PM
28 | T RA IN ING AND EDUCAT ION
Weprovidedisability-focusededucationandtrainingtodoctors,nurses,alliedhealthandeducationprofessionalsandparents/carersofchildrenandyoungpeoplelivingwithdisability.Overthepasttwoyearswehavecontinuedtorunaseriesofface-to-facetrainingevents.In2014-15wealsobeganonlinelearning.Aseriesofwebinarswereheldforparentsandcarerswhichwereaccessedinarangeofplaces,withpositivefeedback.Anonlineeducationprogramforhealthandeducationprofessionalsfollowed.Onlineeventshavebeenrecorded,allowingustobuildanonlinelibraryoflearningresources.
Trainingforhealthandeducationprofessionalshasincluded:
•Twofull-dayseminarsforhealthandeducationprofessionals:
oAutismSpectrumDisorder:ManagingChallengingBehaviours,June2014,and
oBehaviourManagementinChildren&YoungPeoplewithDualDisability:Astrategy-basedapproach,June2015;
•Onehalf-daysymposiumforpaediatriciansandhealthprofessionals:
oCerebralPalsy–AChangingLandscape.DiagnosisandManagementin2015andBeyond,August2015withkeynotespeakerProfessorPeterRosenbaum,McMasterUniversity,Canada;
•Fourwebinarsondisability-focusedtopics;
•Morethan116differentpresentations(bothlocalandinternational)resultinginmorethan130hoursoftrainingtovariousprogramsandgroups;and
•OrientationandsupervisionfortraineemedicalstaffworkingattheRCH.
Forparents/carersfivewebinarswereoffered,designedtoproviderelevant,evidence-basedinformationthatwouldinformtheirdecision-making.
Sinceutilisinge-learningwehaveexperienceda700%increaseinuptakeoftraining.
Toimproveourcommunicationandcreateacontentmanagementsystemforourgrowinglibraryofresourceswehavealsodevelopedanew,purpose-builtwebsite.Thankstoallthefamilies,childrenandyoungpeoplewhoagreedtobephotographed.Wehopeournewwebsiteprovidesclearinformationaboutourvision,missionandgoals,aswellasfocusedinformationforfamilieswhohavedevelopmentalconcernsabouttheirchild.Thewebsitehasarollingblogofourlatestnewsandeventsandthefacilitytoregisterforandpurchasetraining(forprofessionals).Inthefirstthreemonthssincethelaunchofthewebsite,traffictothehomepagehasincreasedby50%andtraffictotheeducationandtrainingpagehasincreasedby80%.Thoseinterestedcanalsosubscribetoourmonthlye-newsletters.Wehavemorethan1000subscribersonourmailinglistnowandouremailshavebeenopenedinmorethan25countries.
FUTURE ENDEAVOURSEncouragedbythepositivefeedbackwewillcontinuewebinar-basedtrainingeventsandwilltrialinformation-sharingpodcasts.Bothwillbeusedtobuildourlibraryofonlineresources.Ourface-to-faceeventswillcontinue,withthehalf-daysymposiumscheduledtobecomeanannualevent.
TRA IN ING AND EDUCAT ION
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 26 18/05/2016 3:41 PM
28 | T RA IN ING AND EDUCAT ION FUND ING | 29
TABLE 1
YEAR FUNDING AGENCY INVESTIGATORS TOPIC AMOUNT
2016-2018 ARCDiscoveryGrant GoldfeldS,WilliamsK,RedmondG,OberklaidF,BadlandH,FreedG,MensahF,WoolfendenS,ProimosJ,KvalsvigA,AhmedE
Changingchildren’schances:Exploringpathwaystodevelopmentalinequities.
$760,000
2016-2020 ARCProjectGrant RinehartR,SciberrsE,HiscockH,WilliamsK,McGillivrayJ,HowlinP,PapadopoulosN.
Tailoringabriefsleepinterventionforautism:arandomizedcontroltrial.
$401,474
2016-2018 NHMRCProjectGrant DownsJ,LeonardH,WilliamsK,DavisE,ReddihoughD,WhitehouseA,JacobyP
Characterisingqualityoflifeanditsdeterminantsforchildrenwithintellectualdisabilityandtheirfamilies.
$520,874
2015-2018 MelbourneChildren’sCampusCareerDevelopmentAward
HarveyA Towardsevidencebasedmanagementofdystoniccerebralpalsy:amodelforallchildrenwithneurodisability
$120,669
2015-2016 ThePerpetualTrusteesFoundation WilliamsK.,RandallM.,BrignellA. Followupstudyofchildrenaged10and15yearswithAutismSpectrumDisorders.
$33,928
2015-2016 JackBrockoffFoundation Williams,K.,CraigJ Understandingsimilaritiesanddifferencesbetweentwins
$66,230
2015 ClinicalSciencesThemegrant,MurdochChildrensResearchInstitute
HarveyA,ScheinbergA,WilliamsK,ReddihoughD
Apilotstudyofgabapentinformanagingpaininchildrenwithdystoniccerebralpalsy
$10,000
2014-2018 NationalHealthandMedicalResearchCouncilPartnershipProjectAPP1076861
WatersE,DavisE,ChanJ,ReddihoughD,CarterR,WilliamsK,GibbsL,ReynoldsJ,TracyJ&McDonaldR.
Developingandevaluatinganewcost-effectivehealthandwellbeingmodelofcarefordisabilityserviceproviders
$578,308
2014-2018 NationalHealthandMedicalResearchCouncilAPP1057997
ReddihoughD,GrahamHK,ImmsC,BadawiN,WatersE,BlairE,CarterR
ACentreforResearchExcellenceinCerebralPalsy
$2,500,000
2014-2018 NationalHealth&MedicalResearchCouncil.EarlyCareerFellowship
ReidS Improvingourunderstandingofthecausesofcerebralpalsy
$304,596
2014-2016 NationalHealth&MedicalResearchCouncil.ProjectGrant
ReidS,DagiaC,ReddihoughD,DitchfieldM,CarlinJ,BlairE,CheongJ.
Understandingwhitematterinjuryinterm-bornchildrenwithcerebralpalsy
$188,642
2014-2016 TheScobie&ClaireMackinnonTrust MuscaraF.,HarfordR.,AndersonV.,O’NeillJ
Treatingparents’distressfollowingtheirchild’sdiagnosisofcerebralpalsy:Apilotstudy
$54,851
2014-2016 AustralianCatholicUniversityResearchFund
ImmsC,ReddihoughD,HoareB,WallenM,ElliotC,GreavesS,RandallM,BradshawE,AdairB
Minimisingimpairment:Amulticentrerandomisedcontrolledtrialofupperlimbsplintingforchildrenwithcerebralpalsy
$775,000
2014-2015 TheHughD.T.WilliamsonTrust,ANZFoundation.
WilliamsK.,CraigJ UNIQUEAutism:Understandingsimilaritiesanddifferencesbetweentwins
$29,844
2014 ClinicalSciencesThemegrant,MurdochChildrensResearchInstitute
WilliamsK,CraigJ,RandallM. Atwinsepigeneticapproachtocausesofautismspectrumdisorder
$15,000
2012-2015 NationalHealth&MedicalResearchCouncilPartnershipProjectGrant
APP1055278
ImmsC,NovakI,ReddihoughD
GrahamHK,ShieldsN,CooryM
Thebestserviceatthebesttime:Improvingtheimplementationofresearchforchildrenwithcerebralpalsy.
$865,853
2011-2015 ARCLinkageGrant CarterM,StephensonJ,WilliamsK,ClarkTR,CostleyDM,MartinJ.
Theefficacyofmodelsforeducationalservicedeliveryforstudentswithautismspectrumdisorders.
$348,446
Total $7,573,715
COMPET I T I VE RESEARCH FUND ING 2014 AND MORE RECENT
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 27 18/05/2016 3:41 PM
30 | S TAFF
S TAF FEmployer Discipline Staff member EFT
RCH Medical Professor Katrina Williams1 1.0
Medical Dr Enver B* 0.2
Medical Dr Catherine Marraffa 0.4
Medical Professor Dinah Reddihough1 1.0
Medical Dr Margaret Rowell 0.2
Medical Dr Giuliana Antolovich 0.6
Medical Dr Kate Thomson-Bowe 0.7
Medical Dr Louise Baker2 1.0
Medical Dr Kate Milner 0.5
Medical Dr Susie Gibb 0.5
Medical Dr Biola Araba (2014) 0.5
Medical Dr Katherine Wilkins (2014) 0.5
Medical Dr Sid Vemuri (2015) 1.0
Psychology Ms Margaret Charlton 0.3
Nursing Ms Marijke Mitchell 0.6
Nursing Ms Sacha Peterson 0.4
Nursing Ms Jenny O’Neill 0.6
Nursing Ms Judy Wells 0.8
Nursing Ms Carmen Akoui 0.6
Nursing Ms Sarah Ziegerink 0.6
PT Dr Adrienne Harvey3 0.4
OT Dr Melinda Randall4 0.4
OT Ms Charmaine Bernie (2015) 0.6
PT Ms Melanie Toy-Laing (2015) 0.4
Administration Ms Elizabeth Cassidy 1.0
Administration Ms Caroline Pobega (2015) 0.6
1. UoM and RCH
2. Works 0.2EFT with the VPRS
3. Also works 0.4EFT with MCRI
4. Also worked 0.6 EFT with UoM until May 2014
*retired or moved to other work
PT Physiotherapist OT Occupational Therapist
SP Speech Pathologist
EFT Equivalent Full Time
(PhD) also a PhD student
UBCDC Uncle Bob’s Child Development Centre
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 28 18/05/2016 3:41 PM
30 | S TAFF STAFF | 31
Employer Discipline Staff member EFT
UBCDC PT Ms Michèle Spreckley (Manager) 1.0
Coordinator Halina Campbell 0.7
Coordinator Suzy Marty 0.6
SP Trudy van Meggelen 1.0
Administration Marilyn Brady* 0.2
Administration Annie Zhang (2015) 0.4
Psychologist Dr Jessica Mifsud 1.0
SP Erica Casey 1.0
SP Erin Bainbridge 0.4
OT Rhiannon Memery 1.0
OT Adele Rullo 1.0
OT Liat Sifris 1.0
SP Laura Doig (2015)* 1.0
SP Oi Yi Pun (2015)* 0.4
Kinder assist Tina Milesi (2015) 0.4
Facilitator Maria Rasquinha casual
Facilitator Joanne Madaffari casual
MCRI Developmental Disability & Rehabilitation Research Group
Research Dr Sue Reid 1.0
Research Ms Molly O’Sullivan 0.2
Research Ms Christine Westbury 0.4
Research Ms Elaine Meehan (PhD) 0.4
Research Dr Kylie Crompton 0.6
Research Ms Kate Willoughby 0.6
Research Ms Rachel Toovey (PhD student) ?
Research Ms Angela Guzys (2014)
Research Ms Tess Lionti*
Administration Ms Tessa Devries 0.8
Administration Ms Debbie Cations (2015) 0.2
UoM Psychology Ms Felicity Klopper 0.4
SP Ms Amanda Brignell (PhD) 0.2
Psychology Mr Shawn Stephenson 1.0
Psychology Dr Tamara May (2015) 1.0
Science Dr Kristine Egberts (2015) 1.0
Administration Ms Michelle Nelthropp * 1.0
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 29 18/05/2016 3:41 PM
32 | PUB L ICAT IONS
2015
1. CrickK,WingertA,WilliamsK,
FernandesR,ThomsonD,HartlingL.An
evaluationofharvestplotstodisplayresults
ofmeta-analysesinoverviewsofreviews:A
cross-sectionalstudy.BMCMedicalResearch
Methodology.2015;15(1).IF:2.27
2. EpsteinA,LeonardH,DavisE,Williams
K,ReddihoughD,MurphyN,Whitehouse
A,DownsJ.Conceptualizingaqualityoflife
frameworkforgirlswithRettsyndromeusing
qualitativemethods.AmericanJournalofMedical
GeneticsPartA.2015
3. HarveyA.Therapyforyoungchildren
withcerebralpalsy:what,when,whereandhow?
InvitedCommentary.DevelopmentalMedicine
andChildNeurology.2015.EarlyOnline
4. HydeC,FuelscherI,EnticottPG,
ReidSMandWilliamsJ.Rapidonlinecontrolto
reachingispreservedinchildrenwithcongenital
spastichemiplegia:evidencefromdouble-step
reachingperformance.JChildNeurol.2015;30
9:1186-1191IF:1.666
5. IanelliM,HarveyA,O’NeillJand
ReddihoughD.Parentalsatisfactionwithinpatient
careofchildrenwithcerebralpalsy.Journalof
PaediatricsandChildHealth.2015IF:1.193
6. ImmsC,NovakI,KerrC,Shields
N,RandallM,HarveyA,GrahamHKand
ReddihoughDS.Improvingalliedhealth
professionals’researchimplementation
behavioursforchildrenwithcerebralpalsy:
protocolforbefore-afterstudy.Implementation
Science.2015;16:16.IF:4.12
7. IorioA,SpencerFA,FalavignaM,
AlbaC,LangE,BurnandB,McGinnT,Hayden
J,WilliamsK,SheaB,etal.UseofGRADEfor
assessmentofevidenceaboutprognosis:rating
confidenceinestimatesofeventratesinbroad
categoriesofpatientsBRITISHMEDICALJOURNAL
350:8
8. JamesS,StevensonSW,SiloveN,
WilliamsK.Chelationforautismspectrum
disorder(ASD).Cochranedatabaseofsystematic
reviews(Online).2015;5:CD010766.IF:6.03
9. LiontiT,ReidSM,WhiteSMand
RowellMM Apopulation-basedprofile
of160AustralianswithPrader-Willisyndrome:
PUB L ICAT IONS PAST 5 YEARS
trendsindiagnosis,birthprevalenceandbirth
characteristics.AmericanJournalofMedical
Genetics.2015;167:371-378.IF:2.048
10. McConachieH,ParrJR,GlodM,
HanrattyJ,LivingstoneN,OonoIP,RobalinoS,
BairdG,BeresfordB,CharmanT,JonesG,LawJ,
LeCouteurAS,MacdonaldG,McCollEM,Morris
C,RodgersJ,SimonoffE,TerweeCB,WilliamsK.
SystematicReviewofToolstoMeasureOutcomes
forYoungChildrenwithAutismSpectrum
Disorder.HealthTechnologyAssessment.2015;
19(41):1-506.
11. MeehanE,FreedG,ReidS,Williams
K,SewellJ,RawickiBandReddihoughD.Tertiary
paediatrichospitaladmissionsinchildrenand
youngpeoplewithcerebralpalsy.Child:Care,
HealthandDevelopment.2015;IF:1.832
12. MeehanE,HarveyA,ReidS,
ReddihoughDS,WilliamsK,CromptonKE,
OmarSandScheinbergA.Therapyserviceusein
childrenandadolescentswithcerebralpalsy:an
Australianperspective.JournalofPaediatricsand
ChildHealth.2015.IF:1.193
13. MeehanE,ReidSM,WilliamsK,Freed
GL,BablFE,SewellJR,RawickiBandReddihough
DS.Tertiarypaediatricemergencydepartmentuse
inchildrenandyoungpeoplewithcerebralpalsy.
JournalofPaediatricsandChildHealth.2015.IF:
1.193
14. MeiC,ReillyS,ReddihoughD,
MensahF,GreenJ,PenningtonLandMorgan
AT. Activitiesandparticipationofchildren
withcerebralpalsy:parentperspectives.Disabil
Rehabil.2015.IF:1.837
15. PetersenS,HarveyA,ReddihoughD
andNewallF.Childrenwithcerebralpalsy:why
aretheyawakeatnight?Apilotstudy.Journalfor
SpecialistsinPediatricNursing.2015;20:98-104.
IF:0.923
16. RandallR,SciberrasE,BrignellA,Ihsen
E,EfronD,DissanayakeC,WilliamsK.Autism
spectrumdisorder:Presentationandprevalence
inanationallyrepresentativeAustraliansample.
AustralianandNewZealandJournalofPsychiatry.
2015;IF:3.41
17. ReddihoughD,MeehanE,StottN
anddeLacyM.TheNationalDisabilityInsurance
Scheme-atimeforrealchangeinAustralia.
DevelopmentalMedicineandChildNeurology.
2015.IF:3.292
18. ReidSM. Improvingsurvivalin
cerebralpalsy:wheredowegofromhere?
[Invitedcommentary].DevelopmentalMedicine
andChildNeurology.2015;57:703-4IF:3.292
19. ReidSMDM,ReddihoughDS.
Relationshipbetweencharacteristicsonmagnetic
resonanceimagingandmotoroutcomesin
childrenwithcerebralpalsyandwhitematter
injury.ResearchinDevelopmentalDisabilities.
2015;178-187.IF:2.735
20. ReidSM,DagiaCD,DitchfieldMR
andReddihoughDS.Greymatterinjurypatterns
incerebralpalsy:associationsbetweenstructural
involvementonMRIandclinicaloutcomes.Dev
MedChildNeurol.2015.IF:3.292.
21. ReidSM,MeehanE,McIntryeS,
GoldsmithS,BadawiN,ReddihoughDSand
incollaborationwiththeAustralianCerebral
PalsyRegistergroup.Temporaltrendsincerebral
palsybyimpairmentseverityandbirthgestation.
DevelopmentalMedicineandChildNeurology.
2015.IF:3.292
22. Smithers-SheedyH,Raynes-Greenow
C,BadawiN,ReidS,MeehanE,GibsonC,Dale
RandCAJ.Neuroimagingfindingsinaseries
ofchildrenwithcerebralpalsyandcongenital
cytomegalovirusinfection.InfectDisordDrug
Targets. 2015;14:185-90.
23. TaghizadehN,DavidsonA,WilliamsK,
StoryD.Autismspectrumdisorder(ASD)andits
perioperativemanagement.PediatricAnesthesia.
2015;25(11).IF:1.85
24. ThomasSL,WilliamsK,RitchieJand
ZwiK.Improvingpaediatricoutreachservicesfor
urbanAboriginalchildrenthroughpartnerships:
viewsofcommunitybasedserviceproviders.
Child:Care,HealthandDevelopment.2015.IF:
1.832
25. WilliamsK.UseofGRADEfor
assessmentofevidenceaboutprognosis:rating
confidenceinestimatesofeventratesinbroad
categoriesofpatients.BMJ.2015;350.IF:14.09
26. Williams,Ketal.
Diagnosingautism:AustralianPaediatricResearch
Networksurveys.JournalofPaediatricsandChild
Health.Inpress
27. WilliamsK.Timelyidentificationof
childrenwithautism:Areweaskingtheright
question?DevelopmentalMedicine&Child
Neurology.2015;IF3.51
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 30 18/05/2016 3:41 PM
32 | PUB L ICAT IONS
28. WilliamsK,BrignellA,PriorM,Bartak
L,RobertsJ.Regressioninautismspectrum
disorders.JournalofPaediatricsandChildHealth.
2015;51(1).IF:1.15
29. WoolfendenS,WilliamsK,Eapen
V,MensahF,HayenA,SiddiqiA,KempL.
Developmentalvulnerability–don’tinvestigate
withoutamodelinmind.Child:care,healthand
development.2015;41(3):337-45.
2014
30. BaikieG,RavikumaraM,Downs
J,NaseemN,WongK,PercyA,LaneJ,Weiss
B,EllawayC,BathgateKandLeonardH.
GastrointestinaldysmotilityinRettsyndrome.
JournalofPediatricGastroenterologyand
Nutrition.2014;58:244-51IF:2.625
31. Bourke-TaylorH,CotterCandStephan
R.Complementary,alternative,andmainstream
serviceuseamongfamilieswithyoungchildren
withmultipledisabilities:Familycoststoaccess
choices.PhysOccupTherPediatr.2014.IF:1.418
32. BrignellA,MorganA,WoolfendenS
andWilliamsK Howrelevantisthe
frameworkbeingusedwithautismspectrum
disorderstoday?InternationalJournalofSpeech-
LanguagePathology.2014;16:43-49.IF:1.412
33. BurnsF,StewartR,ReddihoughD,
ScheinbergA,OoiKandGrahamHK .
Thecerebralpalsytransitionclinic:administrative
chore,clinicalresponsibility,oropportunityfor
auditandclinicalresearch?JournalofChildren’s
Orthopaedics.2014;8:203-213.
34. CooperM,vanSchilfgaardeK,De
MelGandRajapaksaS.Identificationofhuman
parechovirus-3inyounginfantswithinrural
Victoria.JournalofPaediatricsandChildHealth.
2014;50:746-747.IF:1.193
35. CromptonKE,ElwoodN,KirklandM,
ClarkP,NovakIandReddihoughD.Feasibility
oftriallingcordbloodstemcelltreatmentsfor
cerebralpalsyinAustralia.JournalofPaediatrics
andChildHealth.2014;50:540-44.IF:1.193
36. DaddsMR,MacDonaldE,Cauchi
A,WilliamsK,LevyFandBrennanJ.Nasal
oxytocinforsocialdeficitsinchildhoodautism:
Arandomizedcontrolledtrial.JournalofAutism
andDevelopmentalDisorders.2014;44:521-31
IF:3.384
37. EapenV,WoolfendenS,Williams
K,JalaludinB,DissanayakeC,AxelssonEL,
MurphyE,EastwoodJ,DescallarJ,Beasley
D,Rudi,ShortK,SiloveN,EinfeldSandPrior
M.Areyouavailableforthenext18months-
methodsandaimsofalongitudinalbirthcohort
studyinvestigatingauniversaldevelopmental
surveillanceprogram:the‘WatchMeGrow’study.
BMCPediatrics.2014;14;234IF:1.918
38. FreilingerM,BohmM,LanatorI,
Vergesslich-RothschildK,HuberWD,Anderson
A,WongK,BaikieG,RavikumaraM,DownsJ
andLeonardH.Prevalence,clinicalinvestigation,
andmanagementofgallbladderdiseaseinRett
syndrome,DevelopmentalMedicineandChild
Neurology.2014;56:756-62.IF:3.292
39. GilsonK,DavisE,ReddihoughD,
GrahamKandWatersE.Qualityoflifeinchildren
withcerebralpalsy:Implicationsforpractice
JournalofChildNeurology.2014;29:1134-1140
IF:1.666
40. HarveyA,BakerLandWilliamsKNon-
surgicalpreventionandmanagementofscoliosis
forchildrenwithDuchennemusculardystrophy:
Whatistheevidence?JournalofPaediatricsand
ChildHealth.2014;50;E3-9IF:1.193
41. HaylesE,JonesA,HarveyD,
PlummerDandRustonS.Deliveringhealthcare
servicestochildrenwithcerebralpalsyandtheir
families:anarrativereview HealthSocCare
Community.2014.IF:1.369
42. MeiC,ReillyS,ReddihoughD,Mensah
FandMorganA.Motorspeechimpairment,
activity,andparticipationinchildrenwithcerebral
palsy.InternationalJournalofSpeech-Language
Pathology.2014;16:427-435IF:1.412
43. MoldrichRandMarraffaC.
Approachingautism.MedicalStudentJournal.
2014;4:99-103
44. MorganP,MurphyA,OpheimA,
PogrebnoyD,KravtsovSandMcGinleyJ.The
safetyandfeasibilityofaninterventiontoimprove
balancedysfunctioninambulantadultswith
cerebralpalsy:Apilotrandomizedcontrolledtrial.
ClinRehabil.2014IF:2.18
45. MoutiA,ReddihoughD,MarraffaC,
HazellP,WrayJ,LeeKandKohnM.Fluoxetine
forAutisticBehaviors(FABtrial):studyprotocol
forarandomizedcontrolledtrialinchildrenand
adolescentswithautism.Trials.2014;15:230IF:
2.117
46. RandallM,ImmsC,CareyLand
PallantJ.RaschanalysisoftheMelbourne
AssessmentofUnilateralUpperLimbFunction.
DevelopmentalMedicineandChildNeurology.
2014;56:665-72 IF:3.292
47. ReidS.Trendsincerebralpalsysurvival:
arehealthmeasuresreallymakingadifference?
[Invitedcommentary].DevelopmentalMedicine
andChildNeurology.2014.IF:3.292
48. ReidSM,DagiaCD,DitchfieldMR,
CarlinJBandReddihoughDS.Population-based
studiesofbrainimagingpatternsincerebralpalsy
DevelopmentalMedicineandChildNeurology.
2014:56:222-232.IF:3.292
49. ReidSM,DagiaCD,Ditchfield
MR,CarlinJB,MeehanEMandReddihough
DS.AnAustralianpopulationstudyoffactors
associatedwithMRIpatternsincerebralpalsy.
DevelopmentalMedicineandChildNeurology.
2014;56:178-184IF:3.292
50. RinehartN,MayT,McGillivray
J,PapadopoulosN,SciberrasE,WilliamsK
andHiscockH Sleepdisturbanceinautism
spectrumdisorders:Recentadvancesinresearch
andpractice.InPsychMagazineAustralian
PsychologicalSociety.2014;36:2
51. SherwellS,ReidS,ReddihoughD,
WrennallJ,OngBandStargattR.Measuring
intellectualabilityinchildrenwithcerebralpalsy:
canwedobetter?ResearchinDevelopmental
Disabilities.2014;35:2558-2567.IF:2.735
52. Smithers-SheedyH,Raynes-Greenow
C,BadawiN,McIntyreS,JonesCandACPR
Group.Congenitalcytomegalovirusisassociated
withsevereformsofcerebralpalsyandfemale
genderinanAustralianpopulationcohortstudy.
DevelopmentalMedicineandChildNeurology.
2014;56:846-852.IF:3.292
53. SpreckleyM.Inclusiveprogramming.
EarlyYearsJournalBelonging.2014;3:24-25.IF:
1.369
54. VivantiG,PriorM,WilliamsKand
DissanayakeC.Predictorsofoutcomesinautism
intervention:Whydon’tweknowmore?Frontiers
inPediatrics.2014.2 Article58.
55. WilliamsK,WoolfendenS,RobertsJ,
RodgerS,BartakLandPriorM.Autismincontext
2:Assessment,interventionandservicesin
Australia.JournalofPaediatricsandChildHealth.
2014;50:341-346.IF:1.193
PUB L ICAT IONS | 33
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 31 18/05/2016 3:41 PM
34 | PUB L ICAT IONS
56. WilliamsK,WoolfendenS,RobertsJ,
RodgerS,BartakLandPriorM Autismin
context1:Classification,countingandcauses
JournalofPaediatricsandChildHealth.2014;50:
335-340.IF:1.193
57. WoolfendenS,EapenV,Williams
K,HayenA,SpencerNandKempL.A
systematicreviewoftheprevalenceofparental
concernsmeasuredbytheParentsEvaluation
ofDevelopmentalStatus(PEDS)indicating
developmentalrisk.BMCPediatrics.2014;14:
231.IF:1.918
58. WoolfendenS,WilliamsK,Eapen
V,MensahF,HayenA,SiddiqiAandKempL.
Developmentalvulnerability–don’tinvestigate
withoutamodelinmindChild:Care,Healthand
Development.2014.IF:1.832
2013
59. Baikie,G.,Ravikumara,M.,Downs,
J.,Naseem,N.,Wong,K.,Percy,A.,Lane,
J.,Weiss,B.,Ellaway,C.,Bathgate,K.&
Leonard,H.Guidanceinthemanagementof
gastroesophagealrefluxdisease,constipationand
abdominalbloatinginRettsyndrome.Journalof
PediatricGastroenterologyandNutrition.2013.IF
2.625
60. BoydRN,JordanR,PareezerL,etal.
AustralianCerebralPalsyChildStudy:Protocol
ofaprospectivepopulationbasedstudyof
motorandbraindevelopmentofpreschoolaged
childrenwithcerebralpalsy.BMCNeurology
2013;13:57.IF2.486
61. DavisE,MackinnonA,DavernM,et
al.Descriptionandpsychometricpropertiesofthe
CPQOL-Teen:aqualityoflifequestionnairefor
adolescentswithcerebralpalsy.ResDevDisabil
2013;34:344-52IF2.735
62. Davis,E.,Gilson,K.M.,Corr,L.,
Stevenson,S.,Williams,K.,Reddihough,D.,
Waters,E.,Herrman,H.&Fisher,J.2013.
EnhancingSupportforthementalhealthof
parentsandcarersofchildrenwithdisability
Available:http://www.disabilitycareaustralia.gov.
au/document/519
63. CorrL,TeoE,Ummer-ChristianR,
DavisE,WilliamsK,ReddihoughD,Scheinberg
A,WatersE.Developingtrainingguidelinesfor
localareacoordinatorsworkingwithchildren
andyoungpeoplewithdisabilityandtheir
families2013.Availablefrom:http://www.
disabilitycareaustralia.gov.au/sites/default/files/
documents/Davis_PDF_LAC_project.pdf
64. GreenwoodV,CrawfordN,Walstab
J,ReddihoughDS.Immunisationcoveragein
childrenwithcerebralpalsycomparedtothe
generalpopulation.JPaediatrChildHealth2013;
49:E137-E41.IF1.193
65. HarveyA,RandallM,ReidSM,etal.
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whitematterinjury:doesgestationalageaffect
functionaloutcome?ResDevDisabil2013;
34:2500-06.IF2.735
66. Leonard,H.,Ravikumara,M.,Baikie,
G.,Naseem,N.,Ellaway,C.,Percy,A.,Abraham,
S.,Geerts,S.,Lane,J.,Jones,M.,Bathgate,K.
&Downs,J.Assessmentandmanagementof
nutritionandgrowthinRettsyndrome.Journal
ofPediatricGastroenterologyandNutrition,
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67. LevacDE,GalvinJ.Whenisvirtual
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69. MestermanR,GorterJW,Harvey
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70. O’CallaghanME,MacLennan
AH,GibsonCS,etal.Geneticandclinical
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71. RandallM,HarveyA,ImmsC,LeeK,
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99. SetoI,FoisyM,ArkisonB,KlassenT,
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ReddihoughD.Motorimageryoftheunaffected
handinchildrenwithspastichemiplegia.Dev
Neuropsychol2012;37:84-97.IF2.67
102. WilliamsK,MarraffaC.Noevidence
yettosupportomega-3fattyacidsasatreatment
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546.IF1.193
103. WilliamsK,TangM.Probioticsmay
preventupperrespiratorytractinfections,but
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Health2012;48:942-43.IF1.193
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105. WilliamsK,WrayJA,WheelerDM.
(2012)IntravenousSecretinforAutismSpectrum
Disorders(ASD)TheCochraneReview.IF5.939
106. WoolfendenS,SarkozyV,RidleyG,
CooryM,WilliamsK.Asystematicreviewoftwo
outcomesinautismspectrumdisorder-epilepsy
andmortality.DevMedChildNeurol2012;
54:306-12.IF3.292
107. WoolfendenS,SarkozyV,RidleyG,
HayenA,WilliamsK.Asystematicreviewofthe
diagnosticstabilityofautismspectrumdisorder.
ResAutismSpectrDisord2012;6:345-54.IF
2.212
2011
108. AlhusaniA,CrosbieJ,ShepherdR,
DeanC,ScheinbergA.Nochangeinpassive
musclestiffnessfollowingBotulinumtoxin
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DevMedChildNeurol2011;53:553-58.IF3.292
109. CarterM,RobertsJ,WilliamsK,
etal.InterventionsusedbyAustraliansample
ofpreschoolchildrenwithautismspectrum
disorders.ResAutismSpectrDisord2011;
5:1033-41.IF2.212
110. DobsonF,MorrisME,BakerR,Graham
HK.Unilateralcerebralpalsy:apopulation-based
studyofgaitandmotorfunction.DevMedChild
Neurol2011;53:429-35.IF3.292
111. DonlauM,ImmsC,MattssonGG,et
al.Childrenandyouthwithmyelomeningocele’s
independenceinmanagingcleanintermittent
catheterizationinfamiliarsettings.ActaPaediatr
2011;100:429.IF1.842
112. FoisyM,WilliamsK.TheCochrane
Libraryandnon-pharmacologicaltreatmentsfor
attentiondeficithyperactivitydisorderinchildren
andadolescents:anoverviewofreviews.Evid-
BasedChildHealth2011;6:283-97.
113. GalvinJ,HewishS,RiceJ,MackayMT.
Functionaloutcomefollowingpaediatricstroke.
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114. GalvinJ,SakzewskiL.Botulinum
toxinAinconjunctionwithoccupationaltherapy
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115. HarveyA,GorterJW.Videogait
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palsy:why,when,whereandhow!GaitPosture
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53:293-94.IF3.292
118. JamesS,MontgomeryP,WilliamsK.
Omega-3fattyacidssupplementationforautism
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2011:DOI:10.1002/14651858.CD007992.pub2.
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al.Shouldchildrenwithcerebralpalsyandnormal
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etal.Leonardetalreply[letter].DevMedChild
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etal.Safety,side-effectsandsubjectivereactions
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Evaluationofglycopyrrolateinthetreatmentof
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13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 34 18/05/2016 3:41 PM
ADV ISORY PANE L
36 | PUB L ICAT IONS
TheAdvisoryPanelhasbeenenergetic,strategicandhasdemonstratedgreatwisdom.Thankstopastmembers,newmembersandongoingmembers.
BRUCE BONYHADY AM (CHAIRMAN)BruceBonyhadyistheinauguralChairoftheNationalDisability
InsuranceAgency,PresidentofPhilanthropyAustraliaandDeputy
ChairoftheAdvisoryGrouptotheSelectCouncilofCOAGon
DisabilityReform.
Bruce’sbackgroundisineconomics,fundsmanagementand
insuranceandhiscurrentrolesincludebeingChairmanofAcadian
AssetManagementAustraliaLtdandaDirectorofDirectorofDexus
WholesalePropertyLimited.Brucehasthreeadultchildren,twoof
whomhavedisabilities.In2010BrucewasmadeaMemberofthe
OrderofAustraliaforhisservicestopeoplewithdisabilitiesand
thecommunity.
PROF GLENN BOWESGlennBowesisSeniorAssociateDean(Engagement)forthe
FacultyofMedicine,Dentistry&HealthSciencesattheUniversity
ofMelbourne.Aclinicalacademicspecialisinginadolescentand
respiratorymedicine,Glennhashadprofessorialappointmentsin
theDepartmentofPaediatricsoftheMelbourneMedicalSchool
since1991.
DR D ROBERT DICKENSRobertDickensisanHonoraryOrthopaedicSurgeonandConsultant
totheDepartmentofOrthopaedicsattheRCH.Hewaspreviously
theHeadoftheDepartmentofOrthopaedicsatTheRoyalChildren’s
HospitalandworkedformanyyearswithDinahReddihoughandthe
DepartmentofChildDevelopmentandRehabilitation(nowknown
asDevelopmentalMedicine),toassistchildrenwithdisabilities.
A/PROF ADAM SCHEINBERGAdamScheinbergisapaediatricrehabilitationspecialist
whoworkedinSydneyatTheChildren’sHospitalWestmead,
beforemovingtoVictoriain2009astheStatewideMedicalDirector
oftheVictorianPaediatricRehabilitationService(VPRS).TheVPRS
providesambulatoryrehabilitationservicesateightsitesaround
Victoria,andinpatientrehabilitationprogramsatMonashChildren’s
andRoyalChildren’sHospitals.InformationabouttheVPRSisat
www.health.vic.gov.au/vprs/.DrScheinberghasaninterestin
translatingresearchintoclinicalpractice.Heisanassociateinvestigator
ontheCerebralPalsy-CREandBrainRecovery-CRE“MovingAhead”,
andleadsclinicalresearchonChronicFatigueSyndromefundedbya
MasonFoundationgrant.Heistheimmediatepastpresidentofthe
AustralasianAcademyofCerebralPalsyandDevelopmentalMedicine.
PROF VICKI ANDERSONVickiisaProfessorandDirectorofPsychologyattheRCH,and
DirectorofCriticalCareandClinicalSciencesattheMurdoch
ChildrensResearchInstitute.HerresearchgroupattheRCH,the
AustralianCentreforChildNeuropsychologicalStudies(ACCNS),
wasestablishedin2000.
Vickiisconsultingeditoronanumberofinternationaljournals
includingtheJournaloftheInternationalNeuropsychological
Society,ChildNeuropsychology,DevelopmentalNeuropsychology,
andDevelopmentalNeurorehabilitation.ShehasbeenChairofthe
NHMRCMentalHealthpanel,amemberoftheNHMRCAssignors
AcademyandisamemberoftheNHMRCprinciplecommittee,the
AustralianHumanEthicsCommittee.SheisafellowoftheAcademy
ofSocialSciencesofAustraliaandafellowoftheAustralianSociety
fortheStudyofBrainImpairment.
ADV ISORY PANE L | 37
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 35 18/05/2016 3:41 PM
MS SUE HUNTSueHunthasworkedupanddowneasternAustraliainsenior
executivepositionsintheartsindustryforover20years,and
heldastringofboardmembershipsacrossahugevarietyofarts
andgovernmentorganisations.InJuly2010,Suereturnedtoher
homestateofVictoriaforthefirsttimeinoveradecadetotake
upthepositionofExecutiveDirectoroftheRCHFoundation.
Withabackgroundasastagemanagerandtechnicaldirector
fortheVictoriaStateOpera,shebecametheGeneralManager
oftheGeelongPerformingArtsCentre(1995-99)andwas
GeneralManageroftheQueenslandTheatreCompany(1999-
2003).ShewassubsequentlyDirectorofPerformingArtsfor
theSydneyOperaHouse(2003-06),andthenbecamethe
FoundingCEOofCarriageWorks,Sydney’snewhome
ofcontemporaryartsandculture(2006–2010).
DR CATHERINE MARRAFFACatherineMarraffaisadevelopmentalpaediatricianwithover25
yearsofclinicalexperienceinthedisabilityfield.Shehascaredfor
alargenumberofpatientswitharangeofphysicalandintellectual
disabilitieswhohavebeenfollowedfromearlychildhoodto
youngadulthood.Shehasparticularexpertiseinthediagnosisand
managementofchildrenwithautism.Shehasbeeninvitedtositon
manyVictorianstategovernmentworkingpartiessincereturning
toAustraliafromtheUK18yearsago.Duringhertimeaschairman
oftheStateCommittee,DivisionofPaediatricsandChildHealth,
RoyalAustralasianCollegeofPhysicians(2004-2008),shefocussed
onimprovingservicesforchildrenwithdisabilitiesinVictoria.She
isaboardmemberoftheOlgaTennisonAutismResearchCentre
atLatrobeUniversity.
Researchinterestsincludethelinkbetweenautismandbowel
symptoms,autismandmovementdisturbanceusingthereach-
to-graspmovementsandcurrentresearchinvolvesexamining
theroleofmedicationinchildrenwithautism.
MRS ANNE MCGEARYAnneMcGearyhasbeenraisingfundsfortheRCHsince1994.She
wasafoundingmemberofUltimateChallengeAuxiliary,whichwas
establishedtoraisefundsfortheDepartmentofChildDevelopment
andRehabilitation(nowknownasDevelopmentalMedicine).After
11yearsshebegananotherAuxiliary,TrailblazersAuxiliary.Anne’s
latebrotherhadadisabilityand“myownpathledmetoProfessor
DinahReddihoughandthewonderfulworkshedoesforchildren
withdisabilities”.AnneisalsoaDirectorofatravelcompany.
MRS KATIE O’CALLAGHANKatieO’Callaghanisaparentofachildwithcerebralpalsy.
Sheisaqualifiedoccupationaltherapist,andholdsaGraduate
DiplomaofManagement,whichshecompletedwhileworking
asanoccupationaltherapistinruralQueensland,aswellasan
MBAfromLondon.
Mostofherprofessionalworkoverthepast10yearshasbeenin
management,bothasaGeneralManagerandHumanResources
Directorinthecommunitysector.Previousdirectorshipsinclude
EcumenicalCommunityHousingandtheEcumenicalHousing
TrustandalsoasaMemberoftheCommitteeofManagementof
EcumenicalHousingInc,whichlaterbecameMelbourneAffordable
Housing.ShehasalsoservedontheCommitteeofManagement
attheVictorianAdvocacyLeagueforIndividualswithaDisability
(VALID),includingthreeyearsasPresident.
ADV ISORY PANE L (CONT )
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13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 36 18/05/2016 3:41 PM
NOTESPROF DINAH REDDIHOUGH, AODinahReddihoughwasDirectorofDevelopmentalMedicine
between1986andJanuary2011.Dinahisinvolvedintheclinical
careofchildrenwithdisabilities,particularlyyoungpeoplewith
cerebralpalsyandhasdevelopedaresearchprogramwhichis
focusedongaininganimprovedunderstandingofthecausesand
outcomesofdisabilitiesinchildhood.SheestablishedtheVictorian
CerebralPalsyRegisterin1987whichisnowoneofthelargest
ofitskind,andhashad46projectsresultingfromit.Dinah
hasbeenawardedover$5millioninresearchgrantsandhas
over120refereedpublicationsandbookchapters.
Dinah’scommunityinvolvementhasincludedMedicalAdvisertothe
ArthurMardsenWhitingSympathyFundsince1995.Shehaschaired
theScientificsub-committeeoftheApexFoundationsince1998and
wasontheBoardofYoorallabetween1986and2013.Shewason
theWesleyMissionBoardofManagementbetween1989-2001.
DinahlaunchedtheAustralasianAcademyofCerebralPalsy
andDevelopmentalMedicinein2001.Thisisamultidisciplinary
groupcommittedtoadvancingknowledgeinthefieldofphysical
disabilityinchildhoodbyconductingscientificmeetings,promoting
educationalactivitiesandfosteringresearch.Ithostsconferences
attwoyearlyintervals.Anorationhasbeennamedinhonour
ofDinah’sfoundationwork.
MRS MARGERY SCHREPPELMargerySchreppelwasaprimaryandjuniorsecondaryteacher
atCaulfieldGrammarSchoolElsternwick,manyschoolsinLondon
priortoretiringatGrimwade,MelbourneChurchofEngland
GrammarSchool.Margeryhasalsoownedtwoartgalleriesin
Gippsland.MargeryjoinedtheRCHWaverleyAuxiliaryafter
retiringandhasbeenraisingfundsfortheDepartmentof
DevelopmentalMedicinefortwelveyears.
PROF KATRINA WILL IAMSKatrinaisapaediatricianandpublichealthphysicianwithan
MScinCommunityChildHealth(UniversityofLondon)anda
PhDonthesubjectofepidemiologyofautismspectrumdisorders
(UniversityofSydney).Katrinaisaninternationallyrecognised
clinicalepidemiologistanddevelopmentalmedicineresearcher.
KatrinatrainedandworkedasaPaediatricianinSydneyandLondon
priortohermovetoMelbourne,andiscurrentlycollaborating
withcolleaguesintheUK,US,theNetherlands,Canadaand
acrossAustraliatoinfluencechildhealthresearchmethodsand
autismresearch.Katrinaisalsoactivelyinvolvedininitiativesthat
aimtoimproveclinicalcare,servicedeliveryandinformpolicyfor
childrenwithdevelopmentaldisabilities.AppointedastheApex
AustraliaProfessorofDevelopmentalMedicine,andDirectorof
DevelopmentalMedicine,KatrinacommencedherroleatRCH
andUniversityofMelbourneattheendofJanuary2011.
ADV ISORY PANE L | 3938 | ADV I SORY PANE L
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NOTES
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 38 18/05/2016 3:41 PM
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 39 18/05/2016 3:41 PM
FOR MORE INFORMATION ABOUT SOLVE@RCH PLEASE CONTACT: DEVELOPMENTAL MEDICINE THE ROYAL CHILDREN’S HOSPITAL MELBOURNE 50 FLEMINGTON ROAD, PARKVILLE 3052 VICTORIA
T 61 3 9345 9823 / 9345 5898 E [email protected] F 9345 4848 WWW.RCH.ORG.AU/CDR WWW.MCRI.EDU.AU/RESEARCH/THEMES/CCN/DEVELOPMENTAL-DISABIL ITY-AND-REHABIL ITATION-RESEARCH/
13954 15303 RCH_Solve ANNUAL REPORT 2016_v8.indd 40 18/05/2016 3:41 PM