SOLVE RCH ANNUAL REPORT · solve @rch annual report january 2014 – december 2015 13954 15303...

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


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


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


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


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


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


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?


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.


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.


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.


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 )


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 )


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.”


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


14 | R ESEARCH RESOURCES

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

RESEARCH RESOURCES


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.

14 | R ESEARCH RESOURCES RESEARCH RESOURCES | 15



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



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!

CENTRE FOR RESEARCH EXCEL LENCE IN CEREBRAL PALSY (CRE -CP )



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

RESEARCH TOP ICS


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.


RESEARCH TOP ICS



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

RESEARCH TOP ICS (CONT )


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.



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)


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


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


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


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


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


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.


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



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.


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


2014:56:222-232.IF:3.292

49. ReidSM,DagiaCD,Ditchfield

MR,CarlinJB,MeehanEMandReddihough

DS.AnAustralianpopulationstudyoffactors

associatedwithMRIpatternsincerebralpalsy.


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.


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



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.

Childrenwithcerebralpalsyandperiventricular

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,

2013.57,451-460.IF2.625

67. LevacDE,GalvinJ.Whenisvirtual

reality“therapy”?.ArchPhysMedRehabil2013;

94:795-98.IF2.441

68. Lionti,T.,Reid,S.M.,Reddihough,D.

S.&Sabin,M.Monitoringheightandweight:

Findingsfromadevelopmentalpaediatricservice.

JournalofPaediatricsandChildHealth,2013.49,

1063-1068.IF1.193

69. MestermanR,GorterJW,Harvey

A,etal.Botulinumtoxintype-Ainchildren

andadolescentswithseverecerebralpalsy:A

retrospectivechartreview.JChildNeurol2013.IF

1.666

70. O’CallaghanME,MacLennan

AH,GibsonCS,etal.Geneticandclinical

contributionstocerebralpalsy:Amulti-variable

analysis.JPaediatrChildHealth2013;49:575-81.

IF1.193

71. RandallM,HarveyA,ImmsC,LeeK,

ReidS.Reliableclassificationoffunctionalprofiles

andmovementdisordersofchildrenwithcerebral

palsy.PhysOccTherPed2013;33:342-52.IF

1.869

72. ReddihoughD,JiangB,LaniganA,

etal.Socialoutcomesofyoungadultswith

cerebralpalsy.JIntellectDevDisabil2013;DOI:

10.3109/13668250.2013.788690IF1.061

73. ReidSM,DagiaCD,DitchfieldMR,

CarlinJB,ReddihoughDS.Systematicreview

ofpopulation-basedstudiesofbrainimaging

patternsincerebralpalsy.DevMedChildNeurol

2013;DOI:10.1111/dmcn.12228.IF3.292

74. ReidSM,WalstabJE,ChongD,

WestburyC,ReddihoughDS.Secondaryeffectsof

botulinumtoxininjectionsintothesalivaryglands

forthemanagementofpaediatricdrooling.J

CraniofacSurg2013;24:28-33.IF0.676

75. RiessS,ReddihoughDS,HowellKB,

etal.ALG3-CDG(CDG-Id):Clinical,biochemical

andmolecularfindingsintwosiblings.Mol

GenetMetab2013;doi.org/10.1016/j.

ymgme.2013.05.020.IF2.827

76. TaylorNF,DoddKJ,BakerRJ,etal.

Progressiveresistancetrainingandmobility-

relatedfunctioninyoungpeoplewithcerebral

palsy:arandomizedcontrolledtrial.DevMed

ChildNeurol2013;55:806-12.IF3.292

77. TerrettG,WhiteR,SpreckleyM.A

preliminaryevaluationoftheparent-childMother

Gooseprograminrelationtochildren’slanguage

andparentingstress.JournalofEarlyChildhood

Research2013;11:16-26.

78. Williams,K.,Brignell,A.,Randall,

M.,Silove,N.&Hazell,P.Selectiveserotonin

reuptakeinhibitorsfortreatingpeoplewith

autismspectrumdisorders.CochraneDatabase

ofSystematicReviews,2013.Issue8.Art.No.:

CD004677.IF5.939

79. WilliamsK,PerkinsD,WheelerD,

HayenA,BaylV.Canquestionsaboutsocial

interactioncorrectlyidentifypreschoolaged

childrenwithautism.JPaediatrChildHealth

2013;49:E167-74.IF1.193

80. Woolfenden,S.,Goldfeld,S.,Raman,

S.,Eapen,V.,Kemp,L.&Williams,K.2013.

Inequityinchildhealth:theimportanceofearly

childhooddevelopment.JournalofPaediatrics

andChildHealth,doi:10.1111/jpc.1217IF1.193

81. Yaplito-LeeJ,RiessS,ReddihoughDS,

etal.Clinical,biochemicalandmolecularfindings

intwosiblings.MolGenetMetab2013.IF2.827

2012

82. BarksL,DavenportP.Wheelchair

componentsandpulmonaryfunctioninchildren

withcerebralpalsy.AssistTechnol2012;24:78-

86.IF1.679


34 | PUB L ICAT IONS PUB L ICAT IONS | 35

83. BolchCE,DavisPG,UmstadMP,

FisherJR.Multiplebirthfamilieswithchildren

withspecialneeds:aqualitativeinvestigationof

mothers’experiences.TwinResHumGen2012;

15:503-15.IF1.918

84. Contopoulos-IoannidisD,SetoI,

HammM,etal.Empiricalevaluationofage

groupsandage-subgroupanalysesinpediatric

randomizedtrialsandpediatricmeta-analyses.

Pediatrics2012;129:S161-S84.IF5.297

85. ForresterM,Mihrshahi,WaughM,

etal.Conscioussedationorgeneralanaesthetic

forintramuscularBoNT-Ainjectionsinchildren

–atwocentrecross-sectionalprospectiveaudit

[letter].EurJPaedNeurol2012;16:215-17.IF

1.934

86. GreavesS,ImmsC,Krumlinde-

SundholmL,DoddK,EliassonAC.Bimanual

behavioursinchildrenaged8-18months:A

literaturereviewtoselecttoyswhichelicittheuse

oftwohands.ResDevDisabil2012;33:240-50.IF

2.735

87. HarveyA,RosenbaumP,HannaS,

Yousefi-NooraieR,GrahamH.Longitudinal

changesinmobilityfollowingsingleevent

multilevelsurgeryinambulatorychildrenwith

cerebralpalsy.JRehabilMed2012;44:137-43.IF

1.683

88. HurwitzR,BlackmoreR,HazellP,

WilliamsK,WoolfendenS.Tricylicantidepressants

forAutismSpectrumdisordersCochrane

DatabaseSystRev2012.IF5.939

89. LiontiT,ReidS,RowellM.The

VictorianPrader-williSyndromeRegisterReport

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90. LiontiT,ReidSM,ReddihoughDS,

SabinM.Monitoringheightandweight:Findings

fromadevelopmentalpaediatricservice.J

PaediatrChildHealth2012;doi:10.1111/j.1440-

1754.2012.02470.x.

91. LiontiT,ReidSM,RowellMM.Prader-

WilliSyndromeinVictoria:mortalityandcausesof

death.JPaediatrChildHealth2012;48:506-11.IF

1.193

92. McMullanS,ChinR,FroudeE,Imms

C.Prospectivestudyoftheparticipationpatterns

ofGrade6andYear8studentsinVictoria,

Australiainactivitiesoutsideofschool.Australian

OccupationalTherapyJournal2012;59:197-208.

IF0.827

93. MorrowAM,HayenA,QuineS,

ScheinbergA,CraigJC.Acomparisonofdoctors’,

parents’andchildren’sreportsofhealthstates

andhealth-relatedqualityoflifeinchildrenwith

chronicconditions.ChildCareHealthDev2012;

38:186-95.IF1.832

94. RandallMJ,ImmsC,CareyL.Further

evidenceofvalidityofthemodifiedMelbourne

Assessmentforneurologicallyimpairedchildren

aged2to4year.DevMedChildNeurol2012;

54:424-28.IF3.292

95. ReidSM,CarlinJB,ReddihoughDS.

Survivalofindividualswithcerebralpalsybornin

Victoria,Australia,between1970and2004.Dev

MedChildNeurol2012;54:353-60.IF3.292


Survivalofindividualswithcerebralpalsyborn

inVictoria,Australia,between1970and2004

–Reidetalreply[letter].DevMedChildNeurol

2012;54:867-8.IF3.292

97. ReidSM,McCutcheonJ,Reddihough

DS,JohnsonH.Prevalenceandpredictorsof

droolingin7to14yearoldchildrenwithcerebral

palsy:apopulationstudy.DevMedChildNeurol

2012;54:1032-36.IF3.292

98. ScheinbergA.EarlyInterventionfor

childrenwithdisability–PositionStatement

WorkingpartyforRACP.2012.

99. SetoI,FoisyM,ArkisonB,KlassenT,

WilliamsK.Theevaluationofanevidence-based

clinicalanswerformatforpediatricians.BMC

Pediatrics2012;12:34.IF1.918

100. ShoreB,YuX,DesaiS,etal.Adductor

surgerytopreventhipdisplacementinchildren

withcerebralpalsy:Thepredictiveroleofthe

grossmotorfunctionclassificationsystem.JBone

JointSurgAm2012;94:326-34.IF2.801

101. WilliamsJ,AndersonV,ReidSM,

ReddihoughD.Motorimageryoftheunaffected

handinchildrenwithspastichemiplegia.Dev

Neuropsychol2012;37:84-97.IF2.67

102. WilliamsK,MarraffaC.Noevidence

yettosupportomega-3fattyacidsasatreatment

forautism.JPaediatrChildHealth2012;48:457-

546.IF1.193

103. WilliamsK,TangM.Probioticsmay

preventupperrespiratorytractinfections,but

shouldwerecommendthem?.JPaediatrChild

Health2012;48:942-43.IF1.193

104. WilliamsK,ThomsonD,SetoI,et

al.Standard6:Agegroupsforpediatrictrials.

Pediatrics2012;129:S153-S60.IF5.297

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

injectiontothecalfinchildrenwithcerebralpalsy.

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.

DevNeurorehabil2011;14:67-71.IF2.67



114. GalvinJ,SakzewskiL.Botulinum

toxinAinconjunctionwithoccupationaltherapy

reducesspasticityandimprovesupperlimb

functionandgoalattainmentinchildrenwith

cerebralpalsy.AustralianOccupationalTherapy

Journal2011;58:132-35.IF0.827

115. HarveyA,GorterJW.Videogait

analysisforambulatorychildrenwithcerebral

palsy:why,when,whereandhow!GaitPosture

2011;33:501-03.IF2.299

116. HoareB,ImmsC,RandallM,CareyL.

Linkingcerebralpalsyupperlimbmeasurements

totheInternationalClassificationofFunctioning

DisabilityandHealth.JRehabilMed2011;

43:987-96.IF1.683

117. ImmsC.Bracingandsplinting

interventionsintheupperlimbsofpeoplewith

cerebralpalsy.DevMedChildNeurol2011;

53:293-94.IF3.292

118. JamesS,MontgomeryP,WilliamsK.

Omega-3fattyacidssupplementationforautism

spectrumdisorders(ASD).CochraneLibrary

2011:DOI:10.1002/14651858.CD007992.pub2.

IF5.939

119. LeonardJM,CozensAL,ReidSM,et

al.Shouldchildrenwithcerebralpalsyandnormal

imagingundergotestingforinheritedmetabolic

disorders?DevMedChildNeurol2011;53:226-

32.IF3.292

120. LeonardJM,CozensAL,ReidSM,

etal.Leonardetalreply[letter].DevMedChild

Neurol2011;53:1161.IF3.292

121. MacdonaldE,DaddsMR,BrennanJL,

etal.Safety,side-effectsandsubjectivereactions

tointranasaloxytocin:Areviewofresearch

studies1990to2010.Psychoneuroendocrinology

2011;36:1114-26.IF4.944

122. O’FlahertySJ,JanakanV,MorrowAF,

ScheinbergA,WaughM.Botulinumtoxinadverse

eventsandhealthstatusinchildrenwithcerebral

palsyinallGMFCSlevels.DevMedChildNeurol

2011;53:125-30.IF3.292

123. ReddihoughDS.Cerebralpalsyin

childhood.AustFamPhysician2011;40:192-96.

IF0.688

124. ReddihoughDS,GrahamHK.

BotulinumtoxintypeBforsialorrheainchildren

withcerebralpalsy:arandomizedtrialcomparing

threedoses[commentary].DevMedChildNeurol

2011;53:488-89.IF3.292

125. ReddihoughDS,ReidSM,PloverC.

Evaluationofglycopyrrolateinthetreatmentof

chronicdrooling.DegenNeuroNeuromuscDis

2011;1:3-7.


Distributionofmotortypesincerebralpalsy:how

doregistrydatacompare?DevMedChildNeurol

2011;53:233-38.IF3.292

127. ReidSM,CarlinJB,Reddihough

DS.Classificationoftopographicalpatternof

spasticityincerebralpalsy:aregistryperspective.

ResDevDisabil2011;32:2909-15.IF2.735


RatesofcerebralpalsyinVictoria,Australia,1970

to2004:hastherebeenachange?DevMed

ChildNeurol2011;53:907-12.IF3.292


UsingtheGrossMotorFunctionClassification

Systemtodescribepatternsofmotorseverity

incerebralpalsy.DevMedChildNeurol2011;

53:1007-12.3.292

130. ReidSM,ModakMB,BerkowitzRG,

ReddihoughDS.Apopulationbasedstudyand

systematicreviewofhearinglossinchildren

withcerebralpalsyDevMedChildNeurol2011;

53:1038-45IF3.292

131. RobertsJ,WilliamsK,CarterM,et

al.Arandomisedcontrolledtrialoftwoearly

interventionprogramsforyoungchildrenwith

autism:Centre-basedwithparentprogramand

Home-based.ResAutismSpectrDisord2011;

5:1553-66.IF2.212

132. ScheinbergAM.Screeningforchildren

bornextremelypretermandextremelylowbirth-

weight–aroleforhealth-relatedqualityoflife

measures/[commentary].DevMedChildNeurol

2011;53:878-80.IF3.292

133. SetoI,ArkisonB,WilliamsK.

Knowledgemanagementinasmallknowledge

intensiveorganisation:researchdesignprocess

attheCochraneChildHealthField.Knowledge

ManagementResearchandPractice2011;

9:378–84.IF0.554

134. SinhaY,SiloveN,HayenA,WilliamsK.

Review.Auditoryintegrationtrainingandother

soundtherapiesforautismspectrumdisorders

(ASD).CochraneDatabaseSystRev2011.IF

5.939

135. SrinivasanJ,MinkJW.Stereotypies

andotherdevelopmentalhyperkinesias.In:

AAlbanese,JJankoviceditors.Hyperkinetic

MovementDisorders:DifferentialDiagnosisand

TreatmentOxford:Wiley-Blackwell,2011.

136. WellsJ.Noeasy-fixtobowel

incontinenceinchildren.OstomyAustralia2011;

20.

137. WilliamsJ,AndersonV,Reddihough

DS,etal.Acomparisonofmotorimagery

performanceinchildrenwithspastichemiplegia

anddevelopmentalcoordinationdisorder.JClin

ExpNeuropsychol2011;33:273–82.IF2.158

138. WilliamsJ,ReidSM,ReddihoughD,

AndersonV.Motorimageryabilityinchildrenwith

congenitalhemiplegia:effectoflesionsideand

functionallevel.ResDevDisabil2011;32:740-48.

IF2.735

139. ZdolsekHA,OleschC,Antolovich

G,ReddihoughD.Intrathecalbaclofentherapy:

Benefitsandcomplications.JIntellectDevDisabil

2011;36:207-13.,IF1.061


ADV ISORY PANE L


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


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 )

38 | ADV I SORY PANE L


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


NOTES


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/


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