CanChild: Research Making a Difference
Transcription
CanChild: Research Making a Difference
CanChild:ResearchMakinga Difference Overviewof CanChildProductivityin2014 Preparedfor Dr.StephenCollins,AssociateDeanResearch Dr.JohnKelton,Dean,FacultyofHealthSciences Dr.PattySolomon,AssociateDeanSchoolofRehabilitationScience Dr.LennoxHuang,Chair,DepartmentofPediatrics SubmittedonbehalfofCanChildby JanWillemGorter,Director July30,2015 Table of Contents Highlightsfrom2014:.............................................................................................................................................2 ProgrammesofResearch......................................................................................................................................6 AutismSpectrumDisorder..............................................................................................................................6 CerebralPalsy.......................................................................................................................................................6 DevelopmentalCoordinationDisorder......................................................................................................7 Epilepsy....................................................................................................................................................................9 FamilyCentredCare........................................................................................................................................10 KnowledgeTranslation..................................................................................................................................10 MildTraumaticBrainInjury........................................................................................................................11 Participation.......................................................................................................................................................12 TransitiontoAdulthood................................................................................................................................13 OurTeam...................................................................................................................................................................15 Scientists,ResearchAssociates,&InternationalCollaborators...................................................15 CanChildResearchandKnowledgeTranslationSupport................................................................17 Publicationsin2014:...........................................................................................................................................18 Published..............................................................................................................................................................18 Books......................................................................................................................................................................40 BookChapters....................................................................................................................................................40 CanChildGrantFunding......................................................................................................................................42 NewFundingfor2014:..................................................................................................................................42 CurrentOngoingProjectsLocatedatCanChild....................................................................................50 1 of 51 Highlights from 2014: People: OurTeamisgrowing! Drs.BrianoDiRezzeandWenonahCampbellwereofferedFacultypositionswithinthe SchoolofRehabilitationScience.Dr.MarkFerrowasofferedajointFacultypositioninthe departmentsofPsychiatryandBehaviouralNeurosciencesandPediatrics.Allbecame ScientistswithCanChildin2014. Dr.SandraHodgettsfromtheUniversityofAlbertabecameaCanChildResearchAssociatein 2014!Drs.LisaChiarello,LynnJeffries,AlyssaLaFormeFiss,andSallyWestcottMcCoy becameInternationalCollaboratorswithCanChild. Publications: CanChildmembershavepublishedover220articlesinpeer‐reviewedjournalsintheareas ofchildhealth,childhooddisability,measurementandknowledgetranslation(in2014). ResearchFunding: Atotalof69grantswerefundedtoCanChildmembers(aseitherPIorco‐I)in2014netting morethan$9milliondollarsinnewgrantfunding. Awards/Recognition: Students CoraLeeMcLarenwasafinalistatthe2014HollandBloorviewPursuitAwardsinToronto. MichellePhoenix,CanChildPhDstudentunderthesupervisionofDr.PeterRosenbaum, receivedtheawardfor‘outstandingposterpresentation’inthePhD/Fellowscategoryatthe ChildHealthResearchDayatMcMaster. TramNguyen(CanChildPhDstudentunderthesupervisionofDr.JanWillemGorter)and AndreaCross(CanChildPhDstudentunderthesupervisionofDr.PeterRosenbaum)were bothawardedaspecialtrainingopportunityinintegratedKnowledgeTranslation(iKT) throughtheCanadianChildHealthClinicianScientistTrainingProgram(CCHCSP)andthe CouncilforCanadianChildHealthResearch(CCCHR).Thistrainingopportunitytookplace inVancouveronJune6‐8th2014. Dr.KeikoShikako‐Thomas,CanChildPost‐DocFellow,wasawardedtravelscholarships throughCIHRandAACPDM. CanChildInternationalCollaborators Dr.LisaChiarellowasawardedtheCatherineWorthinghamawardthroughtheAmerican PhysicalTherapyAssociation. CanChildResearchAssociates Dr.DanaAnabywasawardedaNewInvestigatorCareerAward:Junior1ResearchScholars throughtheFondsderechercheduQuébec‐Santé(FRQS) Dr.GillianKingwasawardedaTier1CanadaResearchChairinOptimalCareforChildren withDisabilities. 2 of 51 Dr.SandraHodgettsandAutismResearchteam(40members)wereawardedthe President’sExcellenceAwardforOutstandingAchievementsinResearchfromtheAlberta HealthServices.ShealsoreceivedateachingawardthroughtheRehabilitationMedicine Students’Association. Dr.SheilaBennettwasawardedtheExcellenceinPublicEducationAward,District8OSSTF AvonMaitland. Dr.DarcyFehlingswaspromotedtoProfessor,DepartmentofPaediatricsattheUniversity ofToronto. CanChildScientists Dr.MaryLawwasnamedInnovatoroftheYearatthe2014InnovationShowcaseat McMasteronNovember12.Thisawardrecognizesherinitiativesoverthelastyeartore‐ vamptheCanChildwebsiteandcreaterevenuestreamsthroughexistingmeasuresandnew serviceofferings.ItwasacknowledgedthatthiswasateameffortfromtheentireCanChild group! CanChildCo‐FounderandCP‐NETExecutiveCommitteeMemberDr.PeterRosenbaum receivedtheLifetimeAchievementAwardattheAmericanAcademyforCerebralPalsyand DevelopmentalMedicine(AACPDM)onSeptember11,2014!Thisawardacknowledges Peter's"creativecontributionsofoutstandingsignificancetothefieldofmedicineandfor thebenefitofpatientswithcerebralpalsyandotherchildhood‐onsetdisabilities."Dr.Darcy Fehlings,ScientificDirector/LeadofCP‐NETandFirstVice‐Presidentofthe68thAnnual MeetingoftheAACPDM,presentedtheaward. Dr.CherylMissiunawasawardedtheJohnandMargaretLillieChairinChildhoodDisability Research. Dr.EyalCohenwasthewinneroftheJuniorFacultyAwardforClinicalExcellencein PaediatricMedicalCarethroughtheDepartmentofPaediatrics,UniversityofToronto, HospitalforSickChildren.HealsoreceivedtheVisitingInnovatorAward,CenterforChild HealthPolicyatStanfordUniversity. Dr.MarkFerrowasawardedtheBrainStarAwardthroughtheInstituteofNeurosciences, MentalHealthandAddictionatCIHR.HealsoreceivedtheW.E.NoonanFellowship, ResearchEarlyCareerAwardthroughtheHamiltonHealthSciencesFoundation. Dr.VirginiaWrightwasawardedtheCircleofHonourAward2014forOutcomesResearch andClinicalCollaborationfromHollandBloorviewKidsRehabilitationHospital. Dr.MaryLawwasawardedtheLifetimeMembershipAwardthroughboththeOntario SocietyofOccupationalTherapistsaswellastheCanadianAssociationofOccupational Therapists 3 of 51 McMaster/CommunityInvolvement OnJune23rd,2014,CanChild launchedits25thAnniversary Celebrations!McMaster leaders,CanChildfriends,families andsupportersgathered tocongratulatetheteam!Aspart oftheevent,CanChildunveiled theredesignof theCanChildhomepage (www.CanChild.ca),thenew communicationsroom,andthe winnersoftheArtContest. InlateSeptember,CanChildmembersparticipatedintheClimb‐a‐thonandAccessibleSport ShowcasewhichwasrunbytheHamiltonAccessibleSportsCouncil OnSaturdayNovember22,2014familiesofchildrenwithdisabilities,serviceproviders, researchersandCanChildstaffgatheredtogetherforacelebratoryFamilyEngagementday ‐CanChild:Whatwe"CAN"dotogetherontheMcMasterCampus.Activitiesincluded liveentertainment,food,family/youthpanel,"hottopic"roundtables,postersand networking.Thedaywasco‐fundedbyMcMasterChildren’sHospitalFoundation,Holland BoorviewResearchInstitute,theOntariofederationforCerebralPalsy(OFCP)andan AwardfromNeuroDevNet,CentreofExcellenceinneurodevelopmentaldisabilities.The daywassharedonline(live‐stream)andrecorded:(www.canchild.ca) 4 of 51 Commercialization In2014,revenuesfromthesaleofCanChildmeasuresnettedapproximately$37,000. CanChildwasexcitedtoannouncethelaunchofitsnewMeasurementandAnalysisService earlierin2014.Thisservice,beginningwiththeMeasureofProcessesofCare‐20(MPOC‐ 20),providesconsultation,electronicdatacollection,analysisandreportingto organizationsforafee.Thenewservicebenefitsfamiliesbyassistingorganizationsto provideservicesthataremorefamily‐centred,abestpracticeinpediatricrehabilitation. CanChildwasalsodelightedtoofficiallyopentheeStoreinlateAugustof2014!Proceeds fromtheStorehelpsupportourknowledgetranslationactivitiestoimprovethelivesof childrenandfamilies. 5 of 51 Programmes of Research Thefollowingpagesoutlineourprogrammesofresearchandourprogressthrough2014. Autism Spectrum Disorder RosenbaumPL(PI),DiRezzeB,CooleyHideckerMJ,LawM, StratfordP,SzatmariP,ZwaigenbaumL.Developmentofthe AutismClassificationSystemofFunctioning:Social Communication.CIHR,$374,666.2011‐2014. RosenbaumPL(PI),DiRezzeB(co‐PI),GeorgiadesS, ZwaigenbaumL,CooleyHideckerMJ,GentlesS,DukuEK. TowardsaFunctionalClassificationSystemforPreschool ChildrenwithAutismSpectrumDisorder:AProspective ExaminationtoClassifySocialCommunicationAbilities. HAHSO,$192,833.2015‐2017. Childrenwithautismspectrumdisorder(ASD)facechallengesinthedevelopmentofsocial communicationabilities—oneofthehallmarkfeaturesofthedisorder.Thereis,however, ambiguityandalackofaconsensusdefinitionfortheconceptof“socialcommunication.”Working collaborativelywithparentsandprofessionals,wehavedevelopedanovel,strengths‐focused classificationtool,theAutismClassificationSystemofFunctioning:SocialCommunication (ACSF:SC).TheACSF:SCempowersparentswiththetypeofinformationtheyvaluemost–namely, meaningfulinsightsintotheirchild’sfunctioning.Parentscanusesuchinformationasthey participatewithprofessionalstoputappropriatesupportsinplacefortheirchild. Thistoolhasbeenunderdevelopmentforthepast3yearswithCIHRgrantfunding.Thestudyteam startedoffbydevelopingthecontentoftheACSF:SCandfieldtestingittoensurethatitclearly describespreschoolagedchildrenwithASD.Since2013,theteamalsotestedthereliabilityofthe ACSF:SCandisnowintheprocessofexaminingitsvalidity.Weaimtohavetheparticipationfrom 50parentsand100professionals(educatorsandclinicians)atthisfinaldevelopmentstage.Our goalhasbeen,andcontinuestobe,toaddressthismajorpracticalchallengeinthefieldofASD–the needforprecisionandconsistencyinhowwediscussandcategorizethefunctionalmanifestations andimpactsofASDfromastrengths‐focusedview. Cerebral Palsy Cerebralpalsy(CP)affects2‐3childrenper1000inthewesternworld(andmanymoreinthe developingworld).CPisdefinedinpartas“…agroupofpermanentdisordersofthedevelopmentof movementandposture,causingactivitylimitation,thatareattributedtonon‐progressive disturbancesthatoccurredinthedevelopingfetalorinfantbrain.”1(Rosenbaum,2008) In2011,theOntarioBrainInstitutefundedtheChildhoodCerebralPalsy IntegratedNeuroscienceDiscoveryNetwork(CP‐NET).Thenetwork consistsofleadingCPresearchersfromacrossOntarioincluding5 CanChildinvestigators.Thepurposeofthisprogramistofurtherour understandingofCPthroughpartnershipsbetweenresearchers, industryandpatientadvocacygroups.In2013,theprojectwasapproved for5yearsofadditionalfunding. 6 of 51 Theprojectconsistsof6platforms:ClinicalRiskFactors(collectsinformationonriskvariables fromneonatalandmaternalhealthrecords);NeuroimagingPlatform(analyzesneuroimaging records);GenomicsPlatform(collectssalivasampletoanalyzeDNA);.Neurodevelopmental Platform(assesseschildrenusingstandardizeddevelopmentaloutcomemeasuresincludinga neurologicalexam);PsychoSocial/ParticipationPlatform(assessmentsofmentalhealthand well‐beingofchildrenandfamilies);andtheKnowledgeTranslationPlatform(bringtogether researchers,industry,patientadvocacygroupsandfamiliestoguidethedirectionoftheproject). CanChildhasbeenleadingtheKnowledgeTranslationactivitiessincetheinceptionoftheproject.In 2014,weheldthreeParentAdvisoryMeetings,developedKnowledgeTranslationpiecestohelp peopleunderstandhowclinicalresearchworks,developedaCP‐NETnewsletterandorganizeda CP‐NETFamilyandSciencedayinconjunctionwithWorldCPDay. ThenewAdolescentandYoungAdultproject(fundedinPhase2oftheproject)isledbyDr.Jan WillemGorterandisinvestigating:thecourseofphysicalhealth(fatigue,pain),mentalhealth (anxietyanddepression)andwell‐beingamongadolescentsandyoungadults(AYA)withCP; explorebrain‐behaviourconnections(emotionalregulationandexecutivefunction);andthe mechanismsofimpairedhealthandwell‐being–andinparticulartheroleofchronicstress–on brainfunctioninganddevelopment. To date,fifteenparticipantshaveconsentedtotakingpartin thefMRIbrainbehaviourprotocol.Thesewillbescheduledinmid‐to‐late2015. CanChild/McMasterisalsoplayingakeyroleinrecruitingandassessingchildrenfromMcMaster Children’sHospitalfortheotherplatforms.Todate,28patientswhofittheinclusioncriteriahave beenidentifiedandapproachedaboutthestudy. DevelopmentalCoordinationDisorder Missiuna,C.(PI),Pollock,N.,Bennett,S.,**Camden,C., **Campbell,W.,McCauley,D.,Gaines,R.,Cairney,J. ImplementationandevaluationofPartneringforChange,an innovativemodelthatwilltransformhealthserviceprovision forschool‐agedchildrenwithdevelopmentalcoordination disorder.MinistryofHealthandLongTermCare.$994,600, 2013‐2015. InOntario,interventionforchildrenwithDCDistypicallyprovidedby occupationaltherapists(OT)inschoolsettingsandinvolvesone‐on‐ oneassessmentfollowedbyintervention(mostofteninvolving withdrawalofthechildfromtheclassroom)totryandchangechildren’sunderlyingmotor impairment.WaitlistsinOntarioareextremelylongfor“SchoolHealthSupportServices”(SHSS) andwait‐timesof18‐24monthsforanOTaretypical.Infact,childrenwithcoordinationdifficulties arethelargestsingleusergroupreferredtotheOntariohomecaresystemacrossallpaediatric andadultpopulations. In2008/09,CanChildbroughttogetherover60stakeholders,includingschoolboard administrators,teachers,specialeducators,governmentpolicyanalystsfromMOHLTC,MEDU, MCYS,healthcaredecision‐makers,healthcareprovidersandfamiliestoshareideasaboutwhat 7 of 51 typeofhealthservicewasactuallyneededtosupportthesechildreninschoolsettings.Theprogram ofservicesthatresulted,PartneringforChange,isevidence‐driven(Missiunaetal.,2012a).OTs buildcapacitythroughcollaborationandcoachingwiththeschoolbecomingthe"client",rather thananyindividualstudent.Thiscomprehensiveprogramofservicesisdeliveredinschoolsettings tomeettheneedsofchildrenwithDCD. In2013,CanChildinvestigatorsreceivedfundingfromtheMinistryofHealthandLongTermCareto continuethisworkandtoevaluatethismodelwithmoreCCACsandschoolboardsintheprovince. Thisprojectwillcollectimportantinformationthatwillguidestrategicplanningandhopefully widespreadimplementationacrossOntario. TheobjectivesofthecurrentPartneringforChangeprojectareto: •facilitateearlieridentificationofchildrenwithDCD; •buildcapacityofeducatorsandparentstomanagetheneedsofthesechildren; •improvechildren'sabilitytoparticipatesuccessfullyinschoolandhomeenvironments; •facilitatefamilymanagementtopreventsecondarydisability. Inthefallof2013,thePartneringforChangemodelofservicedeliverywasimplementedin40 schoolswithinthreeschoolboards:PeelDistrictSchoolBoard,HaltonDistrictSchoolBoardandthe HamiltonWentworthCatholicDistrictSchoolBoard. Inthefirstschoolyear(November2013–June2014),15occupationaltherapists(OTs)provided serviceoneday/weekin40schoolsandoffered: 385teacherin‐services(formalandinformal)tobuildcapacity 704universaldesignforlearningactivitiesatawholeclasslevel;reachingover17,600 children(basedonavg.classsize) 2980opportunitiestoscreensmallgroupsofchildren,trialdifferentiatedinstructionand sharefindingswitheducatorsandparents 3,329individualaccommodationsuggestionsfor592childrenandsharedthatknowledge witheducatorsandfamilies Threehundredandninetytwoofthe592childrenreceivingP4Cserviceswerealsorecruitedinto thestudy.Measurementofchild,familyandeducatoroutcomesisunderwayusingeducatorand parentpre‐andpost‐standardizedmeasuresincluding:theSchoolFunctionAssessment(SFA), ChildandFamilyDemographics,DCD‐Questionnaire,StrengthsandDifficultiesQuestionnaire, KnowledgeQuestionnaires,ParticipationandEnvironmentMeasure. In2014,qualitativeinterviewswerecompletedwithkeystakeholdersincluding14schoolboard managers,principals,andspecialeducators;12healthcarecoordinatorsandmanagers;5OTsand 3researchteammembersafterYear1.FocusgroupsalsowerecompletedwithallOTsinYear1. Additionalinterviewsandfocusgroupsaretakingplaceinthespringof2015. Researchtodatehasshown:thatthisnewmodelisrelevantforchildrenwhohavesignificantdaily motor,self‐care,andacademicchallenges;facilitatesequalaccesstoservices,eliminateswaitlists, andserveslargenumbersofchildrenwithadiversearrayofspecialneeds.Moreover,themany stakeholdersinvolvedintheresearchandimplementationofthisservicemodelhaveindicatedthat thecoreprinciplesandfeaturesofP4Carerelevanttoallhealthprofessionalsandeducators seekinganintegratedframeworkforrehabilitationserviceprovisioninOntario. 8 of 51 Epilepsy RonenG,BoyleM,CunninghamC,LachL,RosenbaumP,& StreinerD.Qualityoflifeinchildrenwithepilepsy:Whatfactorsare important?CIHR,$795,485,2008‐2013 ThisHealthRelatedQualityofLife(HRQL)projectisamulti‐sitelongitudinalstudywithsubjects enrolledfrompediatricshospitalsacrossCanada,involvingfamiliesfromBritishColumbia,Alberta, Manitoba,Saskatchewan,Ontario,andQuebec.Atotalof506participantsandtheirfamiliesfrom acrossthese6provinceswereberecruited.Throughthisstudyweproposetoquantifytheroleof specificbiomedicalandpsychosocialchildandfamilyvariablesthatwebelieveunderliehealth outcomesthatrelatetothechild’spsychosocialadjustment,participation,andhealth‐related qualityoflife.Thisstudyusesamultivariatelongitudinaldesigntoexaminesimultaneouslyseveral determinantsofoutcomesinchildhoodepilepsy. Byconductingthisstudy,wehopetoidentifythevariablesthatareempiricallyassociatedwith outcomesinchildrenandyouthwithepilepsy,aswellastherelativeimportanceoftheseoutcomes overtime.Weanticipatebeingabletoidentifymoderatingandmediatingfactors,includingthose potentiallyamenabletointervention.Thesefindingswillhelpclinicianstoidentifytargetsfor futureinterventionstudies.Thisinturn,willbetterenablepeopletorecognizeandacton opportunitiesforprimaryandsecondarypreventionoftheconsequencesofchildhoodepilepsy,in ordertomanagechildhoodepilepsymoreeffectivelyandholistically.0 Overthepastyear,wehavecompletedstudyrecruitment,aswellasthefirstthreesetsoffollow‐up visits.Wearenowfocusedonfollowingparticipantsfortheirremainingtwovisits.Wepublished ourmethodspaperinAugust,2014. RonenGM,StreinerDL,BoyleMH,CunninghamCE,LachL,VerheyLH,FayedN,ChenK, RosenbaumPL,andtheQUALITÉGroup:(ConnollyM,Bello‐EspinosaLE,RafayMF, AppendinoJP,ShevellM,CarmantL).Outcomestrajectoriesinchildrenwithepilepsy: hypothesesandmethodologyofaCanadianlongitudinalobservationalstudy.Pediatric Neurology.2014:50:38‐48. ******** RonenG,RosenbaumP,BrayS,TimmonsB,&StreinerD.Enhanced PhysicalActivityinChildrenandYouthwithEpilepsy:Exploring Evidenceoftheimpactsonhealth,functioning,psychologicalwellbeing andqualityoflife.HAHSO:$179,570,2012‐2014. RonenG,RosenbaumP,BrayS,TimmonsB,&StreinerD.Physical ActivityinChildrenandYouthwithEpilepsy:ExploringEvidenceofthe impactsonhealth,functioning,psychologicalwellbeingandqualityof life.OBI:$25,000,2014‐2018. 9 of 51 This project explores the relationship between increased physical activity (PA), epilepsy and co‐ morbidityfactors,qualityoflifeandpsychologicalwell‐beinginapedometer‐monitoredenhanced walkingprogramcombinedwithmotivationalstrategies. Weplanto(i)undertakeaprospectiverandomizedcontroltrialtoevaluatetheeffectsofincreasing PA levels through a modern pedometer‐measured walking program, and (ii) follow this by assessment of the sustainability of the program. Results from the enhanced PA group will be comparedtoresultsfromtheexistingPAlevelofthecontrolgroup. WehypothesizethatamotivationalprogramtoincreasethelevelsofPAover6monthswillresultin sustainablyenhancedPA.Inturn,thiswillpositivelyandsimultaneouslyinfluencebrain‐healthand reduce co‐morbidities in children with epilepsy, leading to improved health and life quality in childhood,potentiallycontinuingintoadulthood. Evidencefromthisstudycouldinformsignificantchangesinclinicalcareinthenearfutureleading tosomenon‐pharmacologicalnewstandardsofcare.Thesenewstandardscouldleadtoa reductionincurrentandfutureco‐morbiditiesand,atnoextracosttotheProvincialGovernment. Family Centred Care In2014,weannouncedtheMeasurementandAnalysisServicefortheMeasureofProcessesofCare (MPOC‐20).Thisserviceincludesconsultation,implementationofanevaluationusingtheMPOC, dataanalysis,interpretationandreporting.TheMinistryofChildrenandYouthServicescontacted uswitharequestforCanChildtoconductanevaluationoftheAppliedBehaviouralAnalysis(ABA)‐ basedServicesandSupportsprogramacrossOntario.Overthefall,weengagedincontract negotiationswiththeministrywithafinalcontractsignedinearly2015. Knowledge Translation InpartnershipwithBloorviewResearchInstitute,welaunchedacallforajointCanChild– BloorviewPostdoctoralFellowship(2014‐2016).InDecember2013,Dr.CoraleeMcLarenwas selectedastheinauguralrecipientofthisaward.Dr.McLarenhasabackgroundinbothnursingand dance,aswellasadoctoraldegreeinrehabilitationscience.SheissupervisedbyDrs.Cheryl MissiunaandBarbaraGibson,Corawillconductherownveryexcitingresearchprojectlookingat environments,fromallperspectives,forchildrenwithdisabilitiesinschoolsettings.Infact,in Januaryof2014shewasgrantedaCIHROperatingGranttoinvestigatehowchildrenwithdiverse dis/abilitiesrespondtodance‐playevents. CanChildhasalsoimplementedstrategiestoincreasepartnershipswithfamiliesandyouth.Dr. DianneRussellworkedinclosecollaborationwithaparentofthreechildren,oneofwhomhasa disability,aswellasayoungadultlivingwithadisabilitytoincreaseawarenessofCanChild research.ThispartnershiphasresultedinthedevelopmentoftheParentsParticipatinginResearch Facebookpage.Thepurposeofthisgroupistoprovideinputonprojectplanning,research direction,inputonthecurrentstateofspecialneedsparenting,supportsandservicesaswellas howtotranslateresearchknowledgetobestserveparentsandyouthlivingwithdisability. 10 of 51 Mild Traumatic Brain Injury Thegoalofthisprojectwastodevelopevidence‐basedtoolstodiagnoseandmanagechildrenwith concussion/mildtraumaticbraininjuryinhopesofpreventingfurtherinjuryandreturning children/youthtoactivitysafely.Inordertofacilitaterapiduptake,aKnowledgeBrokerworkedin partnershipwith39familyphysicians,pediatriciansandalliedhealthprofessionalstoimplement thesetoolsintopractice. AspartofthisprojectascopingreviewwascompletetogatherevidenceaboutmTBIanddetermine whatmanagementstrategiesarecurrentlyinplace,andanarticleoutliningthedevelopmentof ReturntoActivityGuidelineswasalsopublished.TheReturntoSchoolGuidelinesarticlewasalso submittedin2014(andsubsequentlypublishedin2015). DeMatteo,C.,McCauley,D.,Stazyk,K.,Adamich,J.,Randall,S.,Missiuna,C.(2014).Post‐ concussionReturntoPlayandReturntoSchoolguidelinesforchildrenandyouth:Ascoping methodology.Disability&Rehabilitation.Aug21:1‐6. DeMatteo,C.,Stazyk,K.,Singh,S.,Giglia,L.,Mahoney,W.,Hollenberg,R.,Malcolmson,C., Harper,J.,Missiuna,C.,Law,M.,McCauley,D.(2014)Returntoactivityprotocolfor childrenafterCONCUSSION:Aconservativeapproach.ClinicalPediatricsearlyonline http://cpj.sagepub.com/content/early/2014/11/21/0009922814558256 **** DeMatteo,C.(PI),Bock,N.;Connolly,J;Cupido,C.;Giglia,L.;Hall,G.;Mazurek,M.; Noseworthy,M.;Singh,S.;Thabane,L.;Timmons,B.SafelyReturningChildrenandYouthto ActivityAfterConcussion.CanadianInstitutesofHealthResearch.$591,518,2014‐2017. ThedecisionregardingreturntoactivityfollowingMild TraumaticBrainInjury(MTBI)/concussionisoneofthe mostdifficultandcontroversialareasinconcussion managementforadultsandevenmorecomplicatedfor childrenandyouth.ChildrenwhosustainaMTBIarebeing providedwithmanagementstrategiesandreturnto activityguidelinesthathavebeendesignedforadult athletes.Thispopulationisathighriskforrepeatinjuries withinashortperiodoftimeaswellasprolonged symptomsaffectingtheirschoolandleisureparticipation andsuccess.InJanuary2014,wereceivedfundingfromCIHRtoevaluateinnovativeReturnto SchoolandReturntoActivityguidelinesthatwererecentlydevelopedaspartofanotherCanChild KTproject.Thestudyiscurrentlyattheactiverecruitmentphase. **** Gagnon,I.(PI);Friedman,D.;Beauchamp,M.H.;Christie,B.R.;DeMatteo,C.A.;Fait,P.; Hung,R.;Juncker,D.;Keightley,M.;Marcoux,J.;McFadyn,B.J.;Mok,E.;Mrazik,M.;Pelland, 11 of 51 L.C.;Ptito,A.;Singh,S.K.;Sirois,K.;Stroman,P.W.;Swaine,B.R.;Taneja,C.;Tator,C.;Zabjek, K.;Zemek,R.GeneratingInnovationthroughtheuseofcommondata:improvingthediagnosis andtreatmentofchildandadolescentMTBIinCanada.CanadianInstitutesofHealth Research,TeamGrant:MildTraumaticBrainInjuryinChildren&Youth‐FondsderechQC, $766,895,2013‐2018. ThegoalofthisTeamGrantistocreateacultureofnationalcollaboration,datacollectionandrapid clinicaluptakeofinnovationindiscovery.Ouroverallgoalistoenhanceourabilitytoconduct multi‐centreresearchandprovideevidence‐basedcareacrossCanadathatwillassistindiagnoses andtreatmentofpediatricMTBI.Twosub‐studiesarecurrentlyunderwayandCanChildfunctions asaresearchsitecollaboratingwithothercentresacrossCanada.Thefirststudyentitled “GeneratingInnovationthroughtheuseofcommondata:improvingthediagnosisandtreatmentof childandadolescentMTBIinCanada”aimstoestablishthefeasibility,andutilityofcollecting commondataelementsforchildrenandadolescentsin7pediatricmTBIfollow‐upprogramsacross Canada.Thesecondstudyentitled“ComparingApproachestoRehabilitationforChildrenandYouth withPersistingSymptomsFollowingConcussion”focusesonchildrenandyouthwithpersisting concussionsymptoms.Bothstudiesarepresentlyattheactiverecruitmentphase. Participation In2014,CanChild’sParticipationresearchteamsengagedinanumberofknowledgetranslation activitiesrelatedtopreviousresearchgrants. TheParticipationandEnvironmentMeasureteamfocusedonactivitiestoincreaseawarenessof andaccesstotheParticipationandEnvironmentMeasureforChildrenandYouth(PEM‐CY).The PEM‐CYUser’sGuidewasfinalizedandthemeasurewasaddedtotheCanChilde‐store.Workhas continuedonPEM‐CYtranslations,with11completedtodate.Theteamiscollaboratingwitha programmertodevelopanelectronicversionofthePEM‐CYforuseinresearchandprogram evaluation.Thisversion,whichisbasedonthesuccessfulparentversion,willbeavailablein2015. Inaddition,theteamconsultedwithagroupfromtheCanadianAssociationofPediatricHealth Centres(CAPHC)aboutincludingthePEM‐CYinanationaldatabaseforchildrenandyouthwith chronicconditions. MembersoftheParticipationandEnvironmentMeasureteamarenowworkingondevelopingan appforparentsbasedonthePEM‐CY’scompanionmeasureforyoungchildren–theYoung Children’sParticipationandEnvironmentMeasure.Thisappwillenableparentstosetparticipation goalsfortheirchildanddevelopplanstoputthegoalsintoaction. TheParticipationInterventionStudyteamcompleteddataanalysisandpublishedthefindingsof theirstudyinvolvingyouthwithphysicaldisabilities.Inthisstudy,youthsetparticipationgoalsand workedwithanoccupationaltherapisttodevelopstrategiesthatfocusedonchangingthe environmentandthetasktoenablethemtomeetthesegoals.Thisteamiscurrentlyworkingona manualtodescribethissuccessfultherapyapproach. 12 of 51 Transition to Adulthood GorterJW(PI),PunthakeeZ(Co‐PI),BrillH,Don‐WauchopeA,GrantC,StewartD, RosenbaumP.ExtensionGrant:Theutilization,utilityandimpactofaTransition CoordinatorandtheYouthKit©amongadolescentswithchronichealthconditionsasthey transitiontoadulthood.Apilotstudy.FundedbyAFPInnovationGrant.$196,493.2011‐2013 LedbyDr.JanWillemGorter([CanChild/Pediatrics]),ourresearchteamcompletedafour‐year prospectivecohortstudythatfollowedyouthwithavarietyofchronichealthconditionsasthey transitionedfrompediatrictoadulthealthcare.TRACE(TransitiontoAdulthoodwithCyberguide Evaluation)wasdesignedtoempoweryouththroughtheuseoftwonoveltransitioninterventions: theYouthK.I.T.(KeepingItTogether),whichisanorganizationaltoolforyouth,andanonline transitionmentor.Insodoing,thestudyrespondedtotheestablishedneedsforimproving transitionprocess(duetothewidelyreportedadversehealthoutcomes)andforevaluating effectivenessoftransitioninterventions. Onehundredandthirtystudyvisitswith50participants werecompletedattwosites(theMcMasterChildren’s HospitalinHamiltonandtheHospitalforSickChildrenin Toronto).NinepediatricclinicsinHamiltonand5clinicsin Torontowereinvolvedinthestudy.With20chronic conditionsbeingrepresented,thisstudyusedarather uniquecross‐condition,non‐categoricalapproach.Data collectionwascompleteinOctober2013.Resultsofthestudy werewrittenupanddisseminationactivitieswerecarried outthrough2014andamanuscriptwassubmittedtoBMJ‐ OpeninDecember2014,whichwasacceptedandpublished in2015: GorterJW,StewartD,CohenE,HlyvaO,MorrisonA,GaluppiB,NguyenT,AmariaK, PunthakeeZ;TRACEStudygroup.Aretwoyouth‐focusedinterventions sufficienttoempoweryouthwithchronichealthconditionsintheirtransitionto adulthealthcare:amixed‐methodslongitudinalprospectivecohortstudy.BMJ Open. Gorter,JW.Teens Reaching Adulthood: Needs and Support for Improved Transitional care In Ontario – TRANSITION Study. Ontario Child Health Support Unit - $77280, 2014-2016. Thejourneyfromchildhoodtoadultlifeinvolvesreachingmilestones,aswellasassumingnew rolesandresponsibilities.Fortherapidlygrowingpopulationofyouthwithchronichealth conditions/disabilities,transitionintotheadulthealthcaresystemisanimportantdimensionof thisjourney.Sadlypatientsandfamiliesoftendescribethetransferofcareas'fallingoffacliff'due tothelackofsufficientpreparation,information,supports,andskillstofacilitatetheprocess. 13 of 51 Althoughmostprovidersencourageyouthwithchronichealthconditionstoassumeresponsibility fortheirownhealth,fewdiscusstransfertoanadultproviderandputineffortstoensure continuity.Moreover,ourcurrenthealthcaresystemisnotdesignedtopreventcomplicationsin chronicconditionsinyouth,andhealthcareproviderslacktheknowledgeandinformationto assureeffectiveclinicalmanagement,andtoeliminatehealthdisparities.Whenyouthtransitions aremetwithbarriers/challenges,transitioningadolescentsareatincreasedriskforpoorhealth outcomes,mostofwhicharepreventable,andfinancialcostsareoftenincurredbythe patient/familyandthehealthcaresystem. AmeetingwasheldonNovember14,2014,thatbroughttogetherover30stakeholders,including patientsandparents,to: Identifytransition“gaps”inOntario; BuildanOntarioTransitionResearchAgenda; Developamethodologicalplatformtoaddressthemosturgentresearchquestions. Thegroupunanimouslyagreedthatweneedtodevelop: anapproachtoimprovetransitionthatiscollaborativeandindividualizedbasedonpatient need; amethodofriskstratificationtoensurethatoptimalcareisdelivered. Movingforward,ourgroupplanstostartbuildingamethodofriskstratificationbyfirst determiningwhotheadolescentsarethataretransitioningoutofpediatrichealthcaresystemand determiningtheirtransitionneeds,anddefiningsuccessfulandunsuccessfultransitions. 14 of 51 Our Team Scientists, Research Associates, & International Collaborators McMasterUniversity Name JanWillemGorter PeterRosenbaum MaryLaw JohnCairney WenonahCampbell* CarolDeMatteo BrianoDiRezze* MarkFerro* Position Director Co‐Founder Co‐Founder Scientist Scientist Scientist Scientist Scientist Department Pediatrics Pediatrics SRS FamilyMedicine SRS SRS SRS Psychiatryand Behavioural Neuroscience/ Pediatrics CE&B Pediatrics SRS SRS SRS Pediatrics CE&B Pediatrics Pediatrics Pediatrics Discipline Physiatry DevelopmentalPediatrics OccupationalTherapy SocialPsychology Speech&Language OccupationalTherapy OccupationalTherapy Epidemiology SteveHanna Scientist Biostatistics AnneKlassen Scientist HealthServicesResearch CherylMissiuna Scientist OccupationalTherapy NancyPollock Scientist OccupationalTherapy DebraStewart Scientist OccupationalTherapy BrianTimmons Scientist Kinesiology StephenWalter ScientistEmeritus Biostatistics OlafKrausdeCamargo ResearchAssociate DevelopmentalPediatrics RonitMesterman ResearchAssociate DevelopmentalPediatrics GabrielRonen ResearchAssociate ChildNeurology Universities&OrganizationsinCanada Name Position Department Discipline DanaAnaby Research PhysicalandOccupational OccupationalTherapy Associate Therapy,McGillUniversity DoreenBartlett Scientist PhysicalTherapy,Western PhysicalTherapy Ontario SheilaBennett Research TeacherEducation,Brock SpecialEducation Associate University JamieBrehaut Research ClinicalEpidemiologyand CognitivePsychology Associate Biostatistics,Universityof Ottawa JanBurke‐Gaffney Research HamiltonFamilyNetwork ParentAdvisor Associate EyalCohen Scientist HospitalforSickChildren Hospitalist JohannaDarrah Research PhysicalTherapy,Universityof PhysicalTherapy Associate Alberta 15 of 51 DarcyFehlings RobinGaines BarbaraGibson SandraHodgetts* MarilynKertoy Research Associate Research Associate Research Associate Research Associate Scientist GillianKing Research Associate DafnaKohen Research Associate LucynaLach Research Associate SanjayMahant Research Associate NancyThomas‐ Research Stonell Associate VirginiaWright Scientist LonnieZwaigenbaum Research Associate JillZwicker Research Associate UniversitiesOutsideCanada Name Position RobertPalisano Scientist GaryBedell LisaChiarello* WendyCoster AdrienneHarvey ChristineImms LynnJeffries* MarianJongmans MarjolijnKetelaar International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator BloorviewResearchInstitute CHEOResearchInstitute BloorviewResearchInstitute OccupationalTherapy, UniversityofAlberta CommunicationSciencesand Disorders,WesternOntario BloorviewResearchInstitute StatisticsCanada PhysicalTherapy OccupationalTherapy Speech&Language Pathology SocialPsychology SocialWork,McGillUniversity SeniorResearch Analyst SocialWork HospitalforSickChildren Pediatrics BloorviewResearchInstitute Speech&Language BloorviewResearchInstitute Pediatrics,UniversityofAlberta PhysicalTherapy Pediatrics OccupationalScienceand OccupationalTherapy, UniversityofBritishColumbia OccupationalTherapy Department/University PhysicalTherapy& Rehabilitation DrexelUniversity,US OccupationalTherapy, TuftsUniversity,US PhysicalTherapy&Rehabilitation DrexelUniversity,US OccupationalTherapy BostonUniversity,US RoyalChildren’sHospital, Australia AustralianCatholicUniversity, Australia RehabilitationSciences, UniversityofOklahoma,US Socialand BehaviouralSciences, UtrechtUniversity,Netherlands UniversityMedicalCenterUtrecht, Netherlands 16 of 51 Developmental Pediatrics Speech&Language Discipline PhysicalTherapy OccupationalTherapy PhysicalTherapy OccupationalTherapy PhysicalTherapy OccupationalTherapy PhysicalTherapy HealthPsychology Rehabilitation Name NiinaKolehmainen LenaKrumlinde Sundholme AlyssaLaformeFiss* LiviaMagalhaes ChrisMorris EvaNordmark IonaNovak OlafVerschuren SarahWestcott McCoy* Position International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator International Collaborator Department/University UniversityofAberdeen,Scotland Discipline OccupationalTherapy KarolinskaInstitutet,Astrid LindgrenChildren'sHospital, Sweden PhysicalTherapy, MercerUniversity,US FederalUniversityofMinasGerais, Brazil PeninsulaCerebraResearchUnit, UniversityofExeter,UK DepartmentofHealthSciences, LundUniversity,Sweden CerebralPalsyAlliance,Australia OccupationalTherapy RehabilitationCentre de Hoogstraat,Netherlands RehabilitationMedicine, UniversityofWashington,US PhysicalTherapy OccupationalTherapy Orthotics Physiotherapy OccupationalTherapy Rehabilitation Medicine PhysicalTherapy *Indicatednewmembersin2014. CanChild Research and Knowledge Translation Support Permanent Name DayleMcCauley NathanNash RachelTeplicky BettyYundt Casual Name DianneRussell MaryBeaudoin AffafAhtisham Position ResearchCoordinator BusinessDevelopment KnowledgeTranslation/Business Development KnowledgeTranslationCoordinator FTE 1.0 1.0(asofOct) 0.4(asofSept) Position Research&KnowledgeExchangeSpecialist DevelopmentOfficer ApplicationDeveloperandWebManager FTE 0.4(untilDec) 0.4(untilAug) 0.8(untilAug) 17 of 51 0.2(untilNov) Publications in 20141: Published 1. Aaron,C.,Chiarello,L.,Palisano,R.,Gracely,E.,O’Neil,M.,&Kolobe,T.(2014). RelationshipsamongFamilyParticipation,TeamSupportandIntensityofEarly InterventionServices.Physical&OccupationalTherapyinPediatrics,34(4),343‐ 355. 2. Abdulsatar,F.,Walker,R.,Timmons,B.,&Choong,K.(2014).“Wii‐Hab”incritically illchildren:Apilotstudy.JournalofPediatricRehabilitationMedicine,6(4),193‐ 204. 3. Ahuja,B.,Klassen,A.,Satz,R.,Malhotra,N.,Tsangaris,E.,Ventresca,M.,&Fayed,N. (2014).Areviewofpatient‐reportedoutcomesforchildrenandadolescentswith obesity.QualityofLifeResearch,23(3),759‐70. 4. Allard,A.,Fellowes,A.,Shilling,V.,Janssens,A.,Beresford,B.,&Morris, C.(2014).Keyhealthoutcomesforchildrenandyoungpeoplewithneurodisability: qualitativeresearchwithyoungpeopleandparents.BMJOpen,4(4). 5. Almasri,N.,O’Neil,M.,&Palisano,R.(2014).PredictorsofNeedsFamiliesof ChildrenwithCerebralPalsy.DisabilityandRehabilitation,36(3),210‐9. 6. Anaby,D.,Law,M.,Coster,W.,Bedel,G.,Khetani,M.,Avery,L.,&Teplicky,R. (2014).Themediatingroleoftheenvironmentinexplainingparticipationof childrenandyouthwithandwithoutdisabilitiesacrosshome,schooland community.ArchivesofPhysicalMedicineandRehabilitation,5(95),908‐917. 7. Anagnostou,E.,Zwaigenbaum,L.,etal.(2014).Autismspectrumdisorder: advancesinevidence‐basedpractice.CanadianMedicalAssociationJournal,186(7), 509‐19. 8. Arim,R.,Kohen,D.,Garner,R.,Lach,L.,Brehaut,J.,MacKenzie,M.,&Rosenbaum, P.(2014).Psychosocialfunctioninginchildrenwithneurodevelopmentaldisorders andexternalizingbehaviorproblems.DisabilityandRehabilitation,37(4),345‐54. 9. Axelsson,A.,Imms,C.,&Wilder,J.(2014).Strategiesthatfacilitateparticipationin familyactivitiesofchildrenandadolescentswithprofoundintellectualandmultiple disabilities:parents’andpersonalassistantsexperiences.Disabilityand 1Onlypublicationsthatarerelevanttochildhealth,childhooddisabilityorknowledgetranslationare includedinthislist. 18 of 51 Rehabilitation,36(25),2169‐2177. 10. Bailey,S.,Boddy,K.,Briscoe,S.,&Morris,C.(2014).Involvingdisabledchildren andyoungpeopleaspartnersinresearch:asystematicreview.Child:CareHealth Development.Advancedonlinepublication. 11. Ballantyne,M.,Benzies,K.,Rosenbaum,P.,&Lodha,A.(2014).Mothers'andhealth careproviders'perspectivesofthebarriersandfacilitatorstoattendanceat Canadianneonatalfollow‐upprograms.Child:Care,Health&Development. Advancedonlinepublication. 12. Ballantyne,M.,Stevens,B.,Guttmann,A.,Willan,A.,&Rosenbaum,P.(2014). MaternalandinfantpredictorsofattendanceatNeonatalFollow‐Upprogrammes. Child:Care,Health&Development,40(2),250‐8. 13. Bartlett,D.,Chiarello,L.,McCoy,S.,Palisano,R.,Jeffries,L.,Fiss,A., Rosenbaum,P.,&Wilk,P.(2014).DeterminantsofGrossMotorFunctionofYoung ChildrenwithCerebralPalsy:AProspectiveCohortStudy.DevelopmentalMedicine andChildNeurology,56(3),275‐82. 14. Bartlett,D.,Chiarello,L.,McCoy,S.,Palisano,R.,Jeffries,L.,Fiss,A.,Rosenbaum, P.,&WilkP.(2014).Determinantsofself‐careparticipationofyoungchildrenwith cerebralpalsy:aprospectivecohortstudy.DevelopmentalNeurorehabilitation, 17(6),403‐13. 15. Batey,C.,Missiuna,C.,Timmons,B.,Faught,B.,Hay,J.,&Cairney,J.(2014).Self‐ efficacytowardphysicalactivitybehaviourofchildrenwithandwithout DevelopmentalCoordinationDisorder.HumanMovementScience,36,258‐71. 16. Batorowicz,B.,Campbell,F.,vonTetzchner,S.,King,G.,&Missiuna,C.(2014). Socialparticipationofschool‐agedchildrenwhousecommunicationaids:theviews ofchildrenandparents.AugmentativeandAlternativeCommunication,30(3),237‐ 51. 17. Bennett,T.,Szatmari,P.,Georgiades,K.,Hanna,S.,Janus,M.,Georgiades,S.,Duku, E.,Bryson,S.,Fombonne,E.,Smith,I.,Mirenda,P.,Volden,J.,Waddell,C.,Roberts, W.,Vaillancourt,T.,Zwaigenbaum,L.,Elsabbagh,M.,Thompson,A.,andThe PathwaysinASDStudyTeam.(2014).DoReciprocalAssociationsExistbetween SocialandLanguagePathwaysinPreschoolerswithAutismSpectrumDisorders? JournalofChildPsychologyandPsychiatry.Advancedonlinepublication. 18. Bennett,T.,Szatmari,P.,Georgiades,K.,Hanna,S.,Janus,M.,Georgiades,S.,Duku,E., Bryson,S.,Fombonne,E.,Smith,I.,Mirenda,P.,Volden,J.,Waddell,C.,Roberts,W., 19 of 51 19. 20. 21. 22. 23. 24. 25. 26. 27. Vaillancourt,T.,Zwaigenbaum,L.,Elsabbagh,M.,Thompson,A.,&ThePathwaysin ASDStudyTeam.(2014).LanguageImpairmentandEarlySocialCompetencein PreschoolerswithAutismSpectrumDisorders:AComparisonofDSM‐5Profiles. 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Bork,P.,Harwood,D.,&Bennett,S.(2014).UsingPlayasaKeytoUnlockingthe SilenceforChildrenwithSelectiveMutism.CanadianChildren,39(3),24. Breau,L.,Clark,B.,Scott,O.,Wiles,C.,Reynolds,S.,Ricci,F.,Sonnenberg,L., Zwaigenbaum,L.,Rashid,M.,&Goez,H.(2014).SocialCommunicationFeaturesin ChildrenFollowingModeratetoSevereAcquiredBrainInjury:ACross‐Sectional PilotStudy.JournalofChildNeurology,30(5),588‐94. Brian,J.,Roncadin,C.,Duku,E.,Bryson,S.,Smith,I.,Roberts,W.,Szatmari,P.,Drmic, I.,&Zwaigenbaum,L.(2014).Emergingcognitiveprofilesinhigh‐riskinfantswith andwithoutAutismSpectrumDisorder.ResearchinAutismSpectrumDisorders, 8(11),1557‐1566. Bult,M.,Verschuren,O.,Lindeman,E.,Jongmans,M.,&Ketelaar,M.(2014).Do childrenparticipateintheactivitiestheyprefer?Acomparisonofchildrenand youthwithandwithoutphysicaldisabilities.ClinicalRehabilitation,28(4),388‐96. Cairney,J.,Veldhuizen,S.,Kwan,M.,Hay,J.,&Faught,B.(2014).Biologicalageand sex‐relateddeclinesinphysicalactivityduringadolescence.MedicineandSciencein SportandExercise,46(4),730‐5. 20 of 51 28. Camden,C.,Léger,F.,Morel,J.,&Missiuna,C.(2014).Aservicedeliverymodelfor childrenwithDCDbasedonprinciplesofbestpractice.PhysicalandOccupational TherapyinPediatrics.Advancedonlinepublication. 29. Camden,C.,Shikako‐Thomas,K.,Nguyen,T.,Graham,E.,Thomas,A.,Sprung,J., Morris,C.,Russell,D.(2014).Engagingstakeholdersinrehabilitationresearch:a scopingreviewofstrategiesusedinpartnershipsandevaluationofimpacts. DisabilityandRehabilitation.Advancedonlinepublication. 30. Camden,C.,Wilson,B.,Kirby,A.,Sugden,D.,&Missiuna,C.(2014).Bestpractice principlesinmanagementofchildrenwithdevelopmentalcoordinationdisorder: Resultsofascopingreview.Child:Care,HealthandDevelopment,41(1),147‐59. 31. Chang,H.,Chiarello,L.,Palisano,R.,Orlin,M.,Bundy,A.,&Gacely,E.(2014).The DeterminantsofSelf‐DeterminedBehaviorsofYoungChildrenwithCerebralPalsy. ResearchinDevelopmentalDisabilities,35(1),99‐109. 32. Chawarska,K.,Shic,F.,Macari,S.,Campbell,D.,Brian,J.,Landa,R.,Hutman,T., 33. 34. 35. 36. Nelson,D.,Ozonoff,S.,Tager‐Flusberg,H.,Young,G.,Zwaigenbaum,L.,Cohen,I., Charman,T.,Messinger,D.,Klin,A.,Johnson,S.,&Bryson,S.(2014).18‐Month PredictorsofLaterOutcomesinYoungerSiblingsofChildrenwithAutismSpectrum Disorder:ABabySiblingsResearchConsortiumStudy.JournaloftheAmerican AcademyofChildandAdolescentPsychiatry,53(12),1317‐1327. Chiarello,L.,Palisano,R.,WestcottMcCoy,S.,Bartlett,D.,Wood,A.,Kang,L., Chang,H.,&Avery,L.(2014).ChildEngagementinDailyLife:AMeasureof ParticipationforYoungChildrenwithCerebralPalsy.DisabilityandRehabilitation, 36(21),1804‐16. Chirico,D.,Wade,T.,Cairney,J.,Klentrou,P.,&O'Leary,D.(2014).Evidenceofa hyperkineticstateinchildrenwithelevatedbloodpressure.AnnalsofHuman Biology.Advancedonlinepublication. Claridge,E.,McPhee,P.,Timmons,B.,Ginis,K.,MacDonald,M.,&Gorter,J.W. (2014).QuantificationofPhysicalActivityandSedentaryTimeinAdultswith CerebralPalsy.MedicineandScienceinSportsandExercise.Advancedonline publication. Cohen,E.(2014).Glucocorticoidsforbronchiolitis‐shouldtheybeused?:...reducing wasteinchildhealthoneinterventionatatime.Evidence‐basedChildHealth:a CochraneReviewJournal,9(3),496‐7. 21 of 51 37. Cohen,E.,&Patel,H.(2014).Respondingtotherisingnumberofchildrenliving withcomplexchronicconditions.CMAJ,186(16),1199‐200. 38. Constand,M.,MacDermid,J.,DalBello‐Haas,V.,&Law,M.(2014).Scopingreviewof patient‐centeredcareapproachesinhealthcare.BMCHealthServicesResearch, 14(1),271. 39. Crompton,K.,Elwood,N.,Kirkland,M.,Clark,P.,Novak,I.,&Reddihough,D.(2014). 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RosenbaumP(2014)Chapter9Issuesinchildhooddisability:Aforty‐yearperspectiveona changingfield.In:SaigalS(Ed.)PreemieVoices.Yongmenandwomenbornvery prematurelydescribetheirlives,challengesandachievements.VitoriaBC:Friesen Press.SteenbeekD,GorterJW,KetelaarM,GalamaK,LindemanE.(2014)GoalAttainment Scalinginpaediatricrehabilitation.Chapter8.InRichardJSiegert,WilliamLevack. RehabilitationGoalSetting:Theory,PracticeandEvidence(hardcover),Taylor&Francis Group.Florida,US.July2014Cat/ISBN:K12930/9781439863299.P143‐160. WiegerinkD,GorterJW,&RoebroeckM.(2014)Sexualdevelopment,sexualhealth,needs, 40 of 51 andlivedexperiences.Chapter38.In:CerebralPalsy.Editors:BernardDan,Margaret Mayston,NigelPaneth,LewisRosenbloom.MacKeithPress,London,UKISBN:978‐1‐ 909962‐38‐5September2014. 41 of 51 CanChild Grant Funding2 New Funding for 2014: ProjectName Feasibilityandacceptabilityofatelehealth interventioninadolescentswithchronicfatigue syndrome:Apilotrandomisedcontrolledtrial. DevelopmentandValidationofDistress ScreeningToolsforusebyCanadianAdolescent andYoungAdult(AYA)CancerPatients& Survivors CanChild Invest. AH FundingSource MCRIEmergin ResearcherGrant Amount Start Date $22,000 2014 (AUS) Duration 1year FundingHeldAt AUS AK C17Research Network $149,554 2014 2year McMaster BG, CMcL, CM CIHR $180,000 2014 3years Bloorview AH NHMRC Not 2014 available 4years AUS BG,EC NormanSaunders ComplexCare Initiative $26,152 2014 1year SickKids BT HeartandStroke Foundationof CanadaGrant‐in‐ Aid $263,229 2014 2years McMaster MovingTogether:Choreographicmappingsof childrenwithdiversedis/abilitiesandtheir neurologicalresponsestoadance‐playevent. NHMRCCentreofResearchExcellencein CerebralPalsyledbyProfessorDinah Reddihough Exploringparent‐healthcareproviderdecision makingpracticesforchildrenwithcomplex healthcareneedsreceivinghomecareservices: Apilotstudy. CardiovascularHealthinchildrenwithchronic inflAMatorycondition:roleofPhysicalactivity, fItnessandinflammatiON:TheCHAMPION Study 2Onlygrantfundingrelevanttochildhooddisability,childhealthorknowledgetranslationhasbeenincludedinthisreport. 42 of 51 ProjectName CanChild Invest. FundingSource Amount Duration FundingHeldAt School‐ageKidshealthfromearlyinvestmentin Physicalactivity:TheSKIPStudy Safelyreturningchildrenandyouthtoactivity afterconcussion. Supportingphysicalactivityinthechildcare environment:TheSPACEStudy. ProgramevaluationofSpecialisterne EmploymentModelforindividualswithASD MildTraumaticBrainInjury–Concussionin Children BT,JC CIHR $769,424 2014 5years McMaster CDM, BT BT CIHR $591,519 2014 3years CIHR $342,801 3year CanChild/ McMaster Western $390,000 2014 2years York $65,454 2014 2years CHEO Anovelassessmentmethodforcognitive functioninconcussion CDM $8,946 2014 1year McMaster CommunityofPracticeonSocialParticipation forChildrenandTeenagerswithDisabilities (CommunautédepratiqueAxéesurla ParticipationSocialedesEnfants‐Adolescents (CAPSEA)ayantdesincapacités) CP2:EngagingCommunityPartnersfor Children’sParticipation(Engagerlespartenaires communautairespourfavoriserlaparticipation desenfantsquiontlaparalysiecérébrale) CP2:EngagingCommunityPartnersfor Children'sParticipation CC OntarioTrillium Foundation OntarioChild HealthSupport Unit(OCHSU) ArtsResearch Board(ARB), Collab/Partnershi psResearch‐ARB MajorSeedProject FRQSC $52,742 2014 2years Quebec $35,000 2014 1year Quebec(McGill) $12,500 2014 1year Quebec (McGill) TowardasystemofEarlyIdentificationto OptimizeChildDevelopment:Developmental ScreeningandSurveillanceintheEarlyYears. JC,CM, WC $609,628 2014 1year McMaster BDR CDM KST, CC,LL REPAR KST,CC, CIHR LL OntarioMinistryof ChildrenandYouth Services 43 of 51 Start Date ProjectName FundingSource Invest. DA,CC, FRQSC CM,WC, SB Start Date $59,233 2014 Duration FundingHeldAt 1year Quebec(McGill) $10,000 2014 1year UofAlberta £796,303 2014 5years UK $8,000 2014 (AUS) 1year AUS AT,DA, REPAR KST $20,000 2014 1year Quebec(McGill) SSHRC $412,867 2014 4years Bloorview $24,515 2014 1year SickKids CanChild Commentorganiserlesservicespourmieux soutenirlesélèveshandicapésouendifficulté d’adaptationoud’appretissage(HDDA): Principesetstratégiesefficacies. ImprovingSocialParticipationforChildrenwith SHod, ASDinElementarySchool:Proposal CM,LZ Development. Involvingfamiliesindevelopingideasfor research,designingcollaborativestudies, seekingresearchgrantsandproducingoutputs directlyusefultofamilies. Theuseofportableinertialmeasurement sensorstomeasureupperlimbfunctionin childrenwithcerebralpalsy:Avalidationand reliabilitystudy. QuébecKnowledgeTranslationinRehabilitation StrategicInitiative ChM AlbertaCentrefor Child,Familyand Community Research Cerebra CI CurtinUniversity Optimizinglifesuccessthroughresidential immersivelifeskillsprogramsforyouthwith disabilities GK, JWG, DS AnExplorationofCareMappingAmongFamilies EC,SM ofChildrenwithMedicalComplexity. Anexplorationofcaremappingamongfamilies ofchildrenwithmedicalcomplexity(CMC). Coresetofoutcomesforchildrenwithsevere neuro‐disabilityandgastrostomytube dependency:Atoolofstandardizedoutcomes forclinicalresearchandpractice. NormanSaunders ComplexCare Initiative EC,SM AssociatedMedical Services $20,000 2014 1year SickKids EC,SM NormanSaunders ComplexCare ResearchGrant Competition $26,500 2014 1year SickKids 44 of 51 Amount ProjectName CanChild Theexperienceofcaregiversofchildrenwith medicalcomplexityreceivingblenderizedtube feeding:aqualitativestudy. EC TheEXPLORINGSLEEPStudy:AStudy EXPLORINGtheExperiencesandPerceptionsof End‐UsersintheDevelopmentofaSLEEP PromotingInterventionamongFamily CaregiversofChildrenwhoDependonMedical Technology. Thompsonfamilyfundraisingforpediatric epilepsyresearch Engagementinthepediatricrehabilitation interventionprocess:Itsnature,measurement, androleinthedeterminationofoutcomes Solution‐focusedcoachinginpediatric rehabilitation:Investigatingtransformative experiencesforfamilies EC Invest. FundingSource Start Date Duration FundingHeldAt NormanSaunders ComplexCare ResearchGrant Competition NormanSaunders ComplexCare ResearchGrant Competition $11,730 2014 1year SickKids $10,949 2014 1year SickKids ThompsonFamily FundRaiser GK, Canadian VW,LC Institutesof HealthResearch GK Instituteof Coaching,McLean Hospital,Harvard MedicalSchool Affiliate Atrialofcoachingwithchildrenandyouthwith GK Canadian cerebralpalsyfocusedonenablingparticipation Occupational inrecreationandleisureactivities Therapy Foundation “Ascopingreviewoftheroleofparentalhopein GK SSHRC thedeliveryofpediatricrehabilitationservices,” Anarts‐mediatedprogramforchildrenwithand GK Centrefor withoutdisabilities:Serviceproviders’useof Leadershipin strategiestocreateaninclusionaryspace Participationand Inclusionwiththe supportofthe HollandBloorview $50,000 2014 1year McMaster $616,110 2014 5years Bloorview $25,640 2014 1year Bloorview $5,000 2014 1year Bloorview $700 2014 1year Bloorview $5,000 2014 1year Bloorview GR 45 of 51 Amount ProjectName CanChild Invest. “Family‐orientedservicesforparentsofchildren GK andyouthwithdisabilities:Ascopingreviewof programsandservicestopromotecaregiver wellnessandoptimizechildren’soutcomes,” “Solution‐focusedcoachinginpediatric rehabilitation:Investigatingtransformative experiencesoffamiliesandserviceproviders,” GK Umbilicalcordbloodstemcellsfortreatmentof cerebralpalsy IN REACH:RandomisedtrialofRehabilitationvery EArlyinCongenitalHemiplegia Makingadifferencetofamiliescaringfor childrenwithneurodevelopmentaldisorders (NDD) IN JWG, DM FundingSource Kids Rehabilitation Hospital Foundation Centrefor Leadershipin Participationand Inclusionwiththe supportofthe HollandBloorview Kids Rehabilitation Hospital Foundation Centrefor Leadershipin Participationand Inclusionwiththe supportofthe HollandBloorview Kids Rehabilitation Hospital Foundation CellCare& CerebralPalsy Foundation| NHMRCProject Funding| NeuroDevNet 46 of 51 Amount Start Date Duration FundingHeldAt $4,500 2014 1year Bloorview $18,000 2014 1year Bloorview $872,351 2014 (AUS) ? AUS $939,038 2014 (AUS) $29,448 2014 ? AUS 6months CanChild ProjectName CanChild TransitionResearch JWG IncreasingAwarenessandImprovingOutcomes ofChildrenwithDevelopmentalCoordination DisorderinBritishColumbia JZ PROMPTIdentificationofCerebralPalsy: Primary‐careReferralOfMotor‐impaired children:PhysicianTools Policycourt:Whereparticipationandpoliciies meetattheMALL(MallasaLivingLabof Rehabilitation) UnderstandingDeterminantsofParticipationin LeisureandRecreationalActivitiesbyChildren withPhysicalDisabilities NeurologicalOutcomeofHypoglycemiain NeonatalEncephalopathy MappingtheBrainandImprovingOutcomesfor ChildrenwithDevelopmentalCoordination Disorder Disclosingtheirchild’sdiagnosisofautism spectrumdisordertoothers:Familyprocesses andperceivedoutcomes Invest. Start Date Duration FundingHeldAt $76,608 2014 2years CanChild MichaelSmith Foundationfor HealthResearch ScholarAward DF,KST CIHR $450,000 2014 5years UBC $330,576 2014 4years McGill 6months McGill 1year Taiwan $703,747 2014 5years SickKids KST LC Centrede Recherche Interdisciplinaire enRéadaptation (CRIR) NationalScience CouncilofTaiwan $15,000 2014 26,100 2014 JZ CIHR JZ CCHCSP $25,000 2014 5years UBC LZ,SH Womenand Children’sHealth ResearchInstitute InnovationGrant AlbertaCentrefor Child,Family& Community Ressearch (ACCFCR) AutismSpeaks $50,000 2014 2years UofAlberta $10,000 2014 1year UofAlberta $420,000 2014 US 3years UofAlberta LZ,SH 47 of 51 Amount OCHSU ImprovingSocialParticipationforChildrenwith SH,LZ ASDinElementarySchool:Proposal Development AutismTreatmentNetwork:EdmontonSite FundingSource ProjectName CanChild Invest. AnExploratoryExaminationoftheTransitionto LZ AdulthoodinAutismSpectrumDisorder DJFiero MKet FamilyNeeds MKet Impactofpediatricepilepsysurgeryonhealth‐ relatedqualityoflife Mentalhealthofchildrenwithchronicillness, MF MF Psychiatriccomorbidityinchildrenwithchronic MF, illness:Apilotstudy JWG MultimorbidityInyouthreceivingmentalhealth MF, services,Grant,HamiltonHealthSciences, JWG Research‐NewProject,$50,000.00 Depressivesymptomsinyouthwithphysical illnessduringthattransitionfromadolescence toadulthood,Grant,,$37,600.00 MF, JWG Clinictocommunityliaisoninchildepilepsy care:Afeasibilitystudy Functionalrecoveryincriticallyillchildren. NF JWG, FundingSource AlbertaCentrefor Child,Family& Community Research (ACCFCR) DeHoogstraat OnderzoeksFonds RevalidatieFonds DeHoogstraat OnderzoeksFonds CIHR Psychiatryand Behavioural Neurosciences, StartupGrant‐ McMaster CIHR HamiltonHealth Sciences(HHS), Personnel‐Career Awards HamiltonHealth Sciences,Research ‐NewProject HamiltonHealth Sciences,Research ‐NewProject OntarioBrain Institute HAHSO 48 of 51 Amount Start Date Duration FundingHeldAt 1year UofAlberta 3000€ 2014 6months Netherlands 21000€ 3600€ 2014 6months Netherlands $697,290 2014 4years SickKids $60,000 2014 3years McMaster $118,656 2014 $50,000 2014 2years 1year McMaster $50,000 2014 2years McMaster $37,600 2014 1year McMaster $250,000 2014 5years Western $200,000 2014 2years McMaster $39,787 2014 ProjectName CanChild Invest. FundingSource Amount Start Date Duration FundingHeldAt $2,456 2014 1year Brock $10,000 2014 1year Brock $873,105 2014 5years Bloorview NationalBank Children’s Foundation SSHRC $100,000 2014 3years Bloorview $74,133 2014 2years Bloorview MilosRaonic Foundation; GoodlifeKids Foundation SSHRC $20,000 2014 2years Bloorview $75,000 2014 2years Bloorview OntarioSportand RecreationFund– Ontario Government $46,000 2014 1year Bloorview NF Brock‐NiagaraAssistiveTechnologyInitiative TheAvonMaitlandDistrictSchoolBoard InclusionCoachingProject Evaluationoftheeffectivenessofroboticgait trainingandgait‐focusedphysicaltherapy programsforchildrenwithcerebralpalsy:A mixedmethodsRCT IgnitingFitnessPossibilities:Aninclusive community‐basedprogramforyouthwith disabilitiesandtypicallydevelopingyouth. Developingandpilot‐testinganinclusive recreationalsportsprogramforpreadolescent childrenwithphysicaldisabilities. IgnitingFitnessPossibilities:Aseriesofpilot implementationsofacommunity‐based inclusivephysicalactivityprogramforyouth SB OntarioJob Creation Partnership; Ministryof Training,Colleges andUniversities SB,KW AvonMaitland DistrictSchool Board VW,DF, CIHR DL VW VW VW IgnitingFitnessPossibilities:Apilotstudyto VW developandtestthefeasibilityofacommunity‐ basedinclusivephysicalactivityprogramfor youth‐implementationatUniversityofToronto SportsCamps IgnitingFitnessPossibilities:Apilot VW implementationatAbilitiesCentre(Whitby)ofa community‐basedinclusivephysicalactivity programforyouth 49 of 51 $10,000 ProjectName CanChild IgnitingFitnessPossibilities:Apilot implementationatVarietyVillageofa community‐basedinclusivephysicalactivity programforyouth. VW DevelopmentoftheFamilyNeedsAssessment PediatricVersion‐PhaseIforAcquiredBrain Injury Exploringavirtualrealitybasedvideogame withhapticfeedbackforsensory‐motor rehabilitationofyoungpeoplewithcerebral palsy Invest. FundingSource ChillinforKids‐ Bloorview Childrens Rehabiltation Hospital Foundation VW Bloorview Childrens Rehabiltation Hospital Foundation VW,DF BRI‐CIRRIS Amount Start Date Duration FundingHeldAt $58,500 2014 1year Bloorview $6,100 2014 1year Bloorview $22,500 2014 1year Bloorview Totalgrantsfundedin2014byCanChildScientists,ResearchAssociatesorInternationalCollaborators Totalnewgrantfundingin2014(CanChildmemberasPIorco‐I):69 $9,335,299(CAD);$420,000(US);$1,841,389(AUS);27,600(EURO);796,303(GBP) Current Ongoing Projects Located at CanChild(fundedpriorto2014andongoingthrough2014): Fehlings,D.(Lead),Ansari,D.,Biddiss,E.,Campbell,C.,Carter,M.,Chau,T.,Chen,R.,Cheyne,D.,DeVeber,G.,Fehlings,M.,Ferro,M.,Frid,P., Gorter,J.W.,Graham,N.,Hall,G.,Henkelman,M.,Hunt,C.,Kawamura,A.,Kim,M.,Kingsnorth,S.,McCormick,A.,Menon,R.,Mesterman,R., Miller,S.,Morshead,C.,Murray,S.,Palisano,R.,Paterson,A.,Pelland,L.,Raybaud,C.,Rosenbaum,P.,Samdup,D.,Scherer,S.,Scott,S., Segalowitz,S.,Shroff,M.,Strother,S.,Taylor,M.,vanderKooy,D.,Wintle,R.,Wright,V.,Young,N.,ChildhoodCerebralPalsyIntegrated NeuroscienceDiscoveryNetwork«CP‐NET».FundedbytheOntarioBrainInstitute.$7,500,000.2013‐2018. 50 of 51 Bartlett,D.,Chiarello,L.,FissA.,Hanna,S.,Jeffries,L.,Palisano,R.,Westcott,S.,Gorter,J.W.Developmentaltrajectoriesofimpairments, associatedhealthconditions,andparticipationofchildrenwithcerebralpalsy.FundedbytheCanadianInstitutesofHealthResearch. $1,008,439,2012‐2017. Gagnon,I.(PI);Friedman,D.;Beauchamp,M.H.;Christie,B.R.;DeMatteo,C.A.;Fait,P.;Hung,R.;Juncker,D.;Keightley,M.;Marcoux,J.; McFadyn,B.J.;Mok,E.;Mrazik,M.;Pelland,L.C.;Ptito,A.;Singh,S.K.;Sirois,K.;Stroman,P.W.;Swaine,B.R.;Taneja,C.;Tator,C.;Zabjek,K.; Zemek,R.GeneratingInnovationthroughtheuseofcommondata:improvingthediagnosisandtreatmentofchildandadolescentMTBIin Canada.CanadianInstitutesofHealthResearch,TeamGrant:MildTraumaticBrainInjuryinChildren&Youth‐FondsderechQC,$766,895, 2013‐2018. Gorter,J.W.,MacDonald,M.,Timmons,B.,Stay‐FIT20‐40years:Across‐sectionalstudytodeterminephysicalactivityandcardiovascular healthinadults(aged20‐40years)withcerebralpalsy.FundedbytheOntarioFederationforCerebralPalsy.$46,134,2012‐2014. Missiuna,C.,Pollock,N.,Bennett,S.,Camden,C.,Campbell,W.,McCauley,D.,Gaines,R.,Cairney,J.Implementationandevaluationof PartneringforChange,aninnovativemodelthatwilltransformhealthserviceprovisionforschool‐agedchildrenwithdevelopmental coordinationdisorder.FundedbytheOntarioMinistryofHealthandLongTermCare.$994,600,2013‐2015. McCoy,S.,Bartlett,D.(co‐PIs),Chiarello,L.,Palisano,R.,Jeffries,L.,Fiss,A.,Hanna,S.andBjornson,K.DevelopmentalTrajectoriesof Impairments,Health,andParticipationofChildrenwithCerebralPalsy.FundedbyPatient‐OrientedOutcomesResearchInstitute(PCORI) contract.$1,906,955(directandindirect;$1,493,692direct).2013‐2016. Ronen,G.M.(PI),Streiner,D.L.,Rosenbaum,P.,Cunningham,C.,Boyle,M.,&Lach,L.OutcomeTrajectoriesinChildrenwithEpilepsy:What FactorsareImportant?amulti‐sitelongitudinalstudy.FundedbyCIHR.$153,497.00annually.2008‐2014. Ronen,G.M.(PI),Timmons,B.,Bray,S.,Rosenbaum,P.,&Streiner,D.L.Enhancedphysicalactivityinchildrenwithepilepsy:potential impactsonhealth,functioning,psychologicalwellbeingandqualityoflife.FundedbyOntarioBrainInstituteCollectiveintractableepilepsy researchprogram.$99,900.00.2012‐2013. Rosenbaum,P.,DiRezze,B.,Cooley‐Hidecker,M.J.,Law,M.,Stratford,P.,Szatmari,P.,&ZwaigenbaumL.Thedevelopmentofafunctional classificationsystemforpreschoolagedchildrenwithAutismSpectrumDisorder.FundedbyCanadianInstitutesofHealthResearch OperatingGrant.$391,601.Apr2011–Sept2014. 51 of 51