JPND Research and Innovation Strategy 2018: Stakeholder …€¦ · Alzheimer’s disease and other forms of dementia, a number expected to double every 20 years. By 2050, in Europe

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JPNDResearchandInnovationStrategy2018:StakeholderConsultation:

Page1:StartPage

OnlineconsultationonJPND'sResearchandInnovationStrategy2018totacklethechallengeofneurodegenerativedisease.

Objective:

JPNDhasidentifiedthroughitsScientificAdvisoryBoardcommonresearchgoalsthatwouldbenefitfromjointactionbetweencountriestoaccelerateprogressonsolutionsthatcanalleviatethesymptoms,andlessenthesocialandeconomicimpactofneurodegenerativedisease(ND)forpatients,familiesandhealthcaresystems.Theaimofthispublicconsultationistogatherviewsandopinionsrelatingtoarecentupdatetothesepriorities,sincethereleaseofJPND'soriginalStrategicResearchAgenda(SRA)in2012.

BelowisashortoverviewvideoontheconsultationandtheResearchandInnovationStrategy.

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Thisonlineconsultationcomprisesof14pagesofquestions,includingtheentryofpersonalcontactdetails.Mostuserswillcompletetheconsultationinaround20minutes.Pleasenote,questionsonspecificthemesareoptionalandmaynotberelevanttoallstakeholdersgroups.

TargetGroups:

Wewelcomeviewsandcontributionsfromresearchers,clinicians,politicians,decisionmakers,patients,carersandmembersofthepublic,togetherwithadministrations,associationsandotherorganisationswithaninterestinneurodegenerativedisease.

PeriodofConsultation:

17thSeptember2018-8thOctober2018

ShortIntroductiontoNeurodegenerativeDisease

Neurodegenerativediseaseisanumbrellatermforarangeofconditions,thatincludeAlzheimer'sdiseaseandParkinson'sdisease,whichprimarilyaffecttheneuronsinthehumanbrain.Thesearedebilitatingandlargelyuntreatableconditionsthatarestronglylinkedwithage.Worldwide,around50millionpeopleareestimatedtobelivingwithAlzheimer’sdiseaseandotherformsofdementia,anumberexpectedtodoubleevery20years.By2050,inEuropealone,thecostburdenforAlzheimer’sandParkinson’sdiseaseisestimatedtosurpass€350billionperyear,highlightingagerelatedNDasoneofthe

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mosturgentmedicalandsocietalchallengesofourtime.

AboutJPND

TheEUJointProgramme-NeurodegenerativeDiseaseResearch(JPND)isthelargestglobalresearchinitiativeaimedattacklingthechallengeofneurodegenerativedisease(ND).JPNDaimstoincreasecoordinatedinvestmentbetweenparticipatingcountriesinresearchaimedatfindingcauses,developingcures,andidentifyingappropriatewaystocareforthosewithND.TheultimategoalofJPNDistofindcuresforNDandtoenableearlydiagnosisforearlytargetedtreatments.

Toviewourprivacystatementpleaseclickhere.

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Page2:Aboutthisconsultation

Aboutthisconsultation

ThisconsultationwillguideyouthroughandrequestyourfeedbackonthedifferentScientificPrioritiesandEnablingActivitiesoftheJPNDResearchandInnovationStrategy.PleasenotethattheprioritiesandactionshavebeenshortenedforthepurposesofthisconsultationandthefullunabridgedversionoftheJPNDResearchandInnovationStrategycanbeviewedclickinghereoronthelinkprovidedwithineachsection.

DoIneedtocompleteeverysection?

Someofthethemesmaybemorerelevanttospecificstakeholdergroups,thoughanyoneisfreetorespondtoanysection.Youcanalsoskipasectionbypressingthe'Next'buttonatthebottomofeachpage.Ifyoudonotwanttoansweraspecificpointintheconsultationpleaseleaveblank.

CanIsavemyresponses?

Ifyouhavestartedthesurveyandwouldliketocompleteitatalaterpoint,selectthe'FinishLater'linkatthebottomofthepage.Thenfollowtheinstructionstoeitherbookmarktheaddressortoemailalinkthatwillallowyoutocontinuethesurveybythedatestated.Consultationresponsescanbesubmittedupto11pm(GMT+1)onMonday8thOctoberwhentheconsultationwillclose,itwillnotbepossibletorespondafterthispoint.

NextSteps:

YourresponsestotheconsultationwillbetakenintoconsiderationbyJPNDduringpreparationoftheupdatedJPNDResearchandInnovationStrategy,forpublicationinearly2019.Inaddition,weplantopublishtheaggregateresponsestotheconsultationwithinasummaryreportontheJPNDwebsite.

Troubleshootingandcomments

Ifyouhaveanyproblemsaccessingorusingthesurveypleaseemailconsultation@jpnd.eu

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Page3:Aboutyou

Pleaseselectatleast1answer(s).

Academicresearcher

Commercialresearcher

Charityorganisationorpatientgroup

Fundingagency,policy-makerorregulator

Healthcareprofessional

Personwithaneurodegenerativeconditionortheircarer

Generalpublicorother

1. Pleaseselectthecategorythatbestrepresentsyouoryourorganisation? Required

Pleaseselectexactly1answer(s).

Yes,attributedtomyselformyorganisation

Yes,onlyanonymously*(Myrepliescanbepublished,butnotanyinformationidentifyingmeasarespondent)

No,I/wedonotwishmy/ourresponsetobeusedotherthanintheoverallanalysisofresponses

2. DoyouconsenttoJPNDpublishingyour/yourorganisation'sresponse? Required

*Ifyouselectthisoption,youshouldensurethatyournamedoesnotappearinthemaintextofyourresponse.JPNDcannottakeresponsibilityforanonymisingresponsesinwhichtheindividualororganisationisidentifiablefromthecontentoftheirresponse.

Mr Mrs Ms

Dr Professor Other

3. Title Required

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3.a. IfyouselectedOther,pleasespecify:

Pleaseenteravalidemailaddress.

4. Contactemailaddress Required

Pleaseenteraresponsethatonlycontainsletters.

5. FirstName Required

Pleaseenteraresponsethatonlycontainsletters.

6. LastName Required

Pleaseselectexactly1answer(s).

Albania

Austria

Australia

Belgium

7. Countryofresidence(oneanswerpossible). Required

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Bulgaria

Canada

CzechRepublic

Denmark

Finland

Germany

Greece

France

Hungary

Israel

Ireland

Italy

Luxembourg

theNetherlands

Norway

Poland

Portugal

Romania

Slovakia

Slovenia

Spain

Sweden

Switzerland

Turkey

UnitedKingdom

Other

7.a. IfyouselectedOther,pleasespecify:

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Yes

No

Iamalreadyinthedatabase

8. MayweincludeyouontheJPNDstakeholderdatabase?ThismeanswemaycontactyoufromtimetotimewiththelatestnewsfromJPND. Required

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Page4:ScientificPriorities

Toachieveimpactthereisaneedtoencouragenovelaswellasmultidisciplinaryapproaches,andtostrengthenandextendexistingcapabilitiesacrossthefullspectrumofbasic,clinical,healthandsocialcare,andtranslationalresearch.

ThequestionsonthefollowingpagesaskforyourviewsonJPND'sprioritiesforfutureresearchacrossthedifferentscientificthemesbelow:

1. Theoriginsandprogressionofneurodegenerativedisease.2. Diseasemechanismsandmodels.3. Diagnosis,prognosisanddiseasedefinitions.4. Developingtherapies,preventivestrategiesandinterventions.5. Healthcareandsocialcare

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Page5:ThemeOne:Originsandprogressionofneurodegenerativedisease

Thisthemefocusesonimprovingourknowledgeaboutthefundamentalcausesofspecificneurodegenerativediseases(ND).Thisincludesidentifyingthefactorsthatdeterminepeople'sriskandresilienceandbetterunderstandingthetriggeringeventsleadingtotheonsetandprogressionofdisease.

WithinthisthemeJPNDhasidentifiedthefollowingresearchpriorities:

A.BetterunderstandthesignificanceofrecentlydiscoveredriskfactorsforND.

B.Identifynewgenetic,environmentalandsocialriskfactorsforND.

C.Deepenunderstandingofthecausesofdifferentproteinmisfoldingdisorders,afeaturecommontomanyND,takingaccountofnewandevolvingtechnologies.

D.UnderstandageingandhowthisrelatestothedevelopmentofandresiliencetoND.

E.Optimisetheuseofdatafromexistingpopulation-basedandND-relevantcohortsandwherepossiblerepurposeorenrichcohortswithNDspecificmeasures.

F.Promotestudiesinvestigatingsynapsedysfunctionandlossincognitivedecline.

G.Expansionofresearchonpost-mortemtissuesfrombrainbanks

H.AdvanceknowledgeoftheinteractionsbetweenNDwithvascularandmetabolicsystemsandtheroleofinfectionandinflammation.

ForfurtherdetailsontheabovepointspleaseseethefullversionoftheJPNDResearchandInnovationStrategybyclickinghere.

Agree

Undecided

Disagree

9. Doyouagreewiththeseresearchpriorities?

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Youranswershouldbenomorethan1000characterslong.

9.a. Pleasecommentonyourresponsebelow:

10. Whatwouldyouliketoseeincludedthatisn'tcoveredintheabovepriorities?(pleaseexplainbelow)

11. Whichprioritiesdoyouconsidertobelessimportant?(pleaseexplainbelow)

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Page6:ThemeTwo:Diseasemechanismsandmodels

Thisthemefocusesonimprovingourunderstandingofthebiologicalbasisunderlyingdiseasemechanismsandprogressionofneurodegenerativedisease(ND).ThisincludestheimprovementofanimalandcellularmodelsofND,togetherwithtakingadvantageofdevelopmentsinexperimentalmedicine(investigationsundertakeninhumans).


A.Developnovelanimalmodels(rangingfromwormstonon-humanprimates)relevanttoNDandtakeintoaccountfactorssuchastheprogressivenatureofND,sexdifferencesandageing.

B.Establishcell-basedmodelsutilisinginnovativeapproachestocreatediseasespecificandpatientderivedcelllinesthatbetterrepresentthecomplexpathologyandinteractionsinND.

C.DeterminetheroleofnewpathwaysproposedforNDpathogenesise.gmechanismsofproteinseeding(spreading).

D.Investigatetraits,pathways,measuresandbiomarkersthatareeithercommonto,orspecificfor,differentND,spanningmolecular-,cellular-,andsystems-levelapproaches.

E.Identifythemechanism(s)thataccountfortheeffectoflifestylefactorsoneitherpromotionofresilience(e.g.educationalenrichmentinearlylife)orneurodegeneration.

F.TargetemergingareastobetterunderstandcomplexconnectionsbetweenbiologicalsystemsthatcontributetoNDpathology(e.gdevelopmodelstoinvestigatethecontributionofthemicrobiome-gut-brainaxis).

G.ElucidatethebiologicalandenvironmentalbasisofbehaviourandpsychologicalsymptomsinND.


Agree


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Undecided

Disagree





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Page7:ThemeThree:Diagnosis,prognosisanddiseasedefinitions

Thisthemefocusesonenhancingresearchrelatingtothedefinitionandclassificationofneurodegenerativedisease(ND),discoveringnewimproveddiagnostictechniquesandidentifyingnewbiomarkers.Ultimately,thisresearchwillenableearlierandmoreaccuratediagnosisofthesediseasesincludingtheabilitytopredictdiseaseprogressionandmonitortheimpactoftherapiesandinterventions.


A.Standardisediseasedefinitions,diagnosticcriteria,assessmenttestsandproceduresforND,developingandvalidatingnewoneswhererequired.

B.Developandvalidatenewdiagnosticcriteriaandproceduresinawaythatsupportstheirimplementationfromthepopulationlevelthroughtoprimarycareandspecialisedclinicalsettings.

C.Harmoniseandstandardiseexistingbiomarkersanddevelop,validateandstandardisenewbiomarkers(e.g.molecular,imaging,functional,cognitive).


Agree

Undecided

Disagree




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Page8:ThemeFour:Developingtherapies,preventivestrategiesandinterventions

Thisthemefocusesontheresearchneededtotransformthetreatmentofneurodegenerativedisease(ND).Thisincludesthedevelopmentofnewtherapies,interventionandpreventionstrategies(e.g.lifestylemodifications),definingbettermethodsofcareoracombinationoftheseapproachesatdifferentinterventiontimes.


A.Improvethevalidityofmodelsystemsusedfortargetidentificationandtherapeuticdevelopmenttoincreasethelikelihoodoftranslationtoclinicalbenefit.

B.Investigatethedifferencesandsimilaritiesinthesusceptibilitytoneurodegenerationacrossspecificneuronalsubpopulationstorevealnoveltargetsthatmaypromoteresilienceandincreaseneuronalplasticity.

C.Ensurethatpopulationanddiseasebasedcohortsareusedappropriatelytotargetpotentialtherapiestosubgroupsofpatientsmostlikelytorespondandattheoptimalstageinthediseasecontinuum.

D.Developdiseasemodifyingapproaches,whereappropriate,thatslow,reduce,orcleartheproteinopathythatunderpinsND.

E.PromoteregenerativestrategiestorestorefunctionforNDwherespecificneuronaldeficitsareimplicated.

F.Developnovelsystemsfordeliveryandtargetingofdrugs/biologicalagentstositesinthebrainandotherpartsofthenervoussystem.

G.Promoteresearchtoconsolidateandexpandmethodsfortheclinicalassessmentofhumandisease.

H.Encouragetheoreticalandempiricalresearchandeducationregardingtheuseofnon-pharmacologicalinterventionssuchascognitivetraining.

I.Encouragesocio-economicstudiesthataddressethicalissuesaroundhownoveldrugsaredevelopedforND;e.g.,howbesttoundertakeearlyphaseclinicalstudiesin‘at-risk’orpresymptomaticindividuals.


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Agree

Undecided

Disagree






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Page9:ThemeFive:Healthcareandsocialcare

Thisthemefocusesonresearchintothetreatment,supportandcareofindividualswithneurodegenerativedisease(ND)togetherwiththeircarersandfamilies.Researchersshouldemployconceptuallysoundapproachestoseektounderstandthefactorsthatcontributetosocialinclusion,civicparticipation,dignity,health-relatedqualityoflife(QoL)andwellbeingforindividualswithNDandtheirfamilies,andtoconsidercomorbidconditionsthatoftenaffectthedeliveryoftreatmentandcare.


A.Evaluatecurrentandpotentialpathwaystodiagnosis,treatment,careandsupportrelevanttoNDglobally,particularlybyreferencetoeffectiveness,cost-effectivenessandequityofaccess.

B.Investigatetheinterplayofbiological,environmental,social,economicandotherfactorsinthedeterminationofcognitivedeclineandbehaviouralandpsychologicalsymptoms.

C.Determinethecriticalfactorsthataffectdisabilityandhealth-relatedQoLandwellbeinginND,includingevaluatingapproachestobettersupportcarers.

D.Focusonaperson-centredapproachtocarewherethoseaffectedbyNDareinvolvedintheplanning,developmentandmonitoringoftheirowncareandindividualhealthneedsandresources.

E.Promoteresearchintoend-of-lifeandpalliativecareforNDpatients.

F.InvestigatetheabilityofassistedlivingandhealthtechnologiestoaddresstheneedsofindividualpatientswithNDandtheircarers.

G.ExamineethicalissuesrelatingtoNDcareandresearch,forexample,whetherandhowconsentissoughtandprovidedinrelationtopeoplewithmentalincapacity.

H.Conductstudiestodeterminehowtoimproveaccesstoformalcaretoreducetheunmetneedsofindividualsoutsidetheformalcaresystem.



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Agree

Undecided

Disagree





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Page10:EnablingActivities

Anumberofcross-cuttingactivitieswillbeneededtoprogressthescientificthemesoutlinedpreviously.Thequestionsonthefollowingpagesaskforyourviewsonthedifferentenablingactivitiesbelow:

1. Supportiveinfrastructureandplatforms2. Partnershipwithindustryandfosteringinnovation3.WorkingwithRegulatoryOrganisations4. Internationalpartnership5. CapacityBuilding6. EducationandTraining7. Connectiontopolicymakers8. Communicationandoutreach

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Page11:ThemeOne:Supportiveinfrastructureandplatforms

ThisthemefocusesonopportunitiestoharmonisemanyaspectsofNDresearchandtodevelopanintegrativeapproachacrossthedimensionsofbasic,clinical,healthcareandsocialscience.Theabilitytodothisisaidedbyrecentadvancesincomputationalpowerandintelligenceandincreasingrecognitionofthestrengthofeffectiveresearchcollaborationandpartnerships.

AccordinglyJPNDshouldseekto:

A.Encourageintegrationandharmonisationofdataandmaterialsandpromoteanopen-accessapproachtosharingandpoolingofdataandresources.

B.Establishstandardisedmethods,platformsandtoolsfordatacollectionandanalysis.

C.Supportthedevelopmentofmultimodalimagingplatformsforaccesstocomplementaryinformationfromdifferentneuroimagingtechnologies,toimproveconvergencebetweenpreclinicalandclinicalresearchdata.

D.Providecoherencetotheglobalinvestmentincutting-edgebuthigh-costareas,suchasproteomicsandcomputationalbiology,toestablishcentresornetworksatthenationalorinternationallevel.

E.Ensurewideraccesstohigh-qualitybiomaterials(e.g.braintissue,fromNDpatientsandfromage-matchedcontrols)providedthroughbiobanks.

F.Linkandbetterexploitexistingcohorts,patientregistersandsample/datacollections.

G.EstablishnationalandglobalregistersofpeoplewithbothcommonandrareformsofND.

H.Promoteregistersofpatientswithcognitiveimpairment,withminimumrequirementsforentry,toreflectreal-worldsituations.


24. Doyouagreewiththeactionsoutlinedinthistheme?

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Agree

Undecided

Disagree



25. Whatwouldyouliketoseeincludedthatisn'tcoveredintheaboveactions?(pleaseexplainbelow)

26. Whichactionsdoyouconsidertobelessimportant?(pleaseexplainbelow)

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Page12:ThemeTwo:Workinginpartnershipwithindustryandfosteringinnovation

ManydifferentcommercialorganisationsengagewithNDresearch,rangingfrompharmaceutical,diagnostic,biotechnology,bioinformatics,imaginganddigitalhealthsectorstoassistedlivingandhealthcareproviders,includingthecarehomeindustry.Connectionbetweenandacrossacademicandcommercialdomainsisessentialtodelivernovelapproachestodiagnosis,treatmentandcare.Therearealsoopportunitiestobringinnovativeandtargetedproductstomarketthroughpartnershipswithsmallandmediumenterpriseswithexpertiseinspecificareas.Effortisneededto:

A.Facilitatehigh-qualitytwo-waycollaborationbetweenacademicandindustrysectorsbypayinggreaterattentiontohowinnovativeresearchandunderstandingofdiseasecansupporttheneedsoftheglobalNDmarket.

B.Promoteinnovationwithinamulti-partnerinternationalfundingframeworkbyfosteringarisk-takingapproachandstreamliningthepathwaytoaccessingandexploitinginnovativediscoveries.

C.Developapproachestogivecompaniesvisibilityandaccesstoscienceopportunitiesemergingfromacademicresearchattheearlieststages,fosteringco-developmentofinnovationacrosssectors.

D.Fosteragenuinecollaborativeculturewithandbetweenindustrysectors,reflectingtheemergingtrendforindustrytoconductlessdiscoverysciencein-house.

E.Promotefundingmechanismsforjointacademic-industryresearch,specificallyintheareasofdatabankinganddatamodelling,private-publiccollaborationforclinicaltrialsandprecompetitiveresearch.

F.Continuecollaborative,academic-industrypartnershipsforsystemlevelapproachestothestudyofthetaxonomyofNDandforthedevelopmentofnewpharmaceuticals.

G.Encouragedataandresourceexchangebetweenindustry,clinicalcentresandacademia,onbothscienceandregulatoryissues.

H.Supportknowledgetransferbetweensectors,encouragingsecondmentsandpeopleexchangealongsidedevelopmentofsharedcampusestosupportinnovation.


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Agree

Undecided

Disagree






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Page13:ThemeThree:Workingwithregulatoryorganisations

Effectivetranslationofacademicandcommercialresearchintomeaningfulandbeneficialtreatmentsforpatientsrequiresdialogueandco-operationwithkeytransnationalandnationalregulatoryagencies,aswellasharmonisationacrossorganisations.Maintainingthehigheststandardsofethicsandgovernancewillpromotepublicconfidence,aswilltheprovisionofuptodateandclearguidance.

Thefollowingactionsareneededtofacilitatetranslation:

A.Promoteinteractionsbetweenresearchers,clinicians,industry,patients,carers,familiesandregulatoryorganisationstoinformkeydatacollectionandstudydesignconsiderationsattheearlieststagespossible.

B.Promotethestandardisationofproceduresaroundthecontrolandconsentofpatientdata.

C.Workwithregulatorstointegratepatientpreferenceandpatient-reportedoutcomeinformationintoallrelevantstagesofresearchandtherapeuticdevelopment.

D.Re-examineresearchgovernanceandregulationinrelationtotheuniqueaspectsofND;e.g.,concerningstudiesinpresymptomaticindividuals.

E.Ensurethatregulatoryguidanceisalignedwithfinancialincentivesandthepracticalitiesofdesigningrigorous,definitiveandstatisticallypowerfulclinicaltrials.

F.Encouragetheacceptanceofalternatetrialdesignswhereappropriate,optimisingtheuseofresourcesandreducingthetimetotrialcompletion.

G.Promotethecreationofsupportnetworks,public/privateconsortiaand/orportalsorhubstodisseminatebestpracticesinregulation.


Agree


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Undecided

Disagree





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Page14:ThemeFour:Internationalpartnership

ItisnowwellrecognisedthattheunmetclinicalneedandsocietalimpactofNDisaglobalissue,andopportunitiesexistforJPNDtolinktoworldwideresearcheffortsinthisarea.Suchco-operationshouldbestrategicallydirectedandofferclearbenefittoJPND’sobjectives.Linkagesmightoperateatdifferentlevels,forexample,activityto:

A.UtiliseresourcesandinfrastructuresoutsideEurope;e.g.,connectingwithlarge-scaleinitiativesthatprovideaccesstomajorgeneticorepidemiologicalsamples,datasetsoremergingtechnologies.

B.PromotealignmentwithgroupscollectingdatarelevanttoNDresearch,suchastheWorldHealthOrganisation’sGlobalDementiaObservatory.

C.Studyspecificpopulationsincountrieswhereuniquegeneticpredispositions,specificornovelenvironmentalexposuresorsocietal/culturaldifferencesmightcontributetotherisk,diseaseexpressionorresilienceinND.

D.Widenourunderstandingofhowculturaldifferencesaffectthemanagementofhealthdeliveryandsocialcare.

E.Promotecloserglobalalignmentofpatientandpublicinvolvement(PPI)andethicsactivities.


Agree

Undecided

Disagree

33. Doyouagreewiththeactivitiesoutlinedinthistheme?



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34. Whatwouldyouliketoseeincludedthatisn'tcoveredintheaboveactivities?(pleaseexplainbelow)

35. Whichactivitiesdoyouconsidertobelessimportant?(pleaseexplainbelow)

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Page15:ThemeFive:CapacityBuilding

AcrossallthreeresearchdomainsofJPNDtherearecertainareasthatlackcapacityandneedtobestrengthenedtoensurefutureopportunitiescanberealised.ApproachestocapacitybuildingalreadyusedwithinJPNDcountriesorinternationallyshouldbeshared,withaviewtoidentifyingapproachesthatmightbeadaptedtothespecificneedsidentifiedbelow.

Accordingly,JPNDneedsto:

A.Encourageresearchnetworksacrossandbetweendisciplinesandresearchers,bothwithinindividualcountriesandinternationally.

B.Improvethetrainingofclinicalresearchers,andtranslationalspecialistsandensurethattheirroleisrecognisedandsustained.

C.Promoteacultureofopenscience,datasharinganddisseminationbetweenglobalinitiativesandteamsdevelopingresourcesforNDresearch.

D.Increasethenumbersofneurodegenerationresearchers,especiallythosewithexpertiseinhealtheconomics,publichealthsurveillance,statistics,computationalbiology,bioinformatics,electrophysiologyanddiseasemodeldevelopment.

E.Supportinterdisciplinaryresearchwithinexistingframeworksandbuildnewalliancesacrossscienceandotherresearchareas(e.g.physics,engineering,artificialintelligence).

F.Promotecapabilityandimprovethequalityofdigitaltechnologiesanddevices(e.g.wearables)intermsofpatientmonitoring,riskprediction,diagnosis,clinicaltrialsandtreatmentinlargepopulations.


Agree

Undecided

Disagree


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Page16:ThemeSix:EducationandTraining

ThereisconsiderableheterogeneityinawarenessamongsthealthcareprofessionalsandrelatedstakeholdergroupsaboutthewaysthatpeopleareaffectedbyND.Anevidence-lededucationalapproachwillhelptoembedaresearchcultureacrossthefullspectrumofhealthandsocialcare.Itwillalsohelptopromotepublichealthmessaging,andleadtogreaterinvolvementincare.Thisstrategywillhelptoreducestigmaandmisunderstandingthatsurroundtheseconditions.

SpecificrecommendationsforeducationandtraininginrelationtoNDareto:

A.ExpandtheclinicaleducationandtrainingofhealthandsocialcareprofessionalswhointeractwithNDpatients.

B.Promoteappreciationamongsthealthandsocialcareprofessionalsofthebenefitsofresearchparticipation.

C.UndertakeresearchtoimproveandimplementeffectivehealtheducationtopromotebroaderawarenessaboutNDacrossallgenerationsandsectorsofsociety.

D.UnderstandhowtocreatechangesinbehaviourinthepopulationthroughstrategiesaimedatmitigatingriskfactorsassociatedwithanunhealthylifestyleandlesseningthechanceofdevelopingND.

E.Developsystemsforeducationandtrainingthatsupportrecognitionframeworksforresearcherswhosharemethodsanddataina‘teamscience’environment.

F.PromoteopportunitiestoengageneurosurgeonsinNDresearchtoreinforcetranslationalmedicine.

G.ProvideeducationforfamiliesandcarersonneworexistingtechnologiesordevicesthatcanpromotefreedomandindependenceofNDpatients.

ForfurtherdetailsontheabovepointspleaseseethefullversionoftheJPNDResearchandInnovationAgendabyclickinghere.

Agree

39. Doyouagreewiththepointsandrecommendationsoutlinedinthistheme?

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Undecided

Disagree



40. Whatwouldyouliketoseeincludedthatisn'tcoveredintheaboverecommendations?(pleaseexplainbelow)

41. Whichrecommendationsdoyouconsidertobelessimportant?(pleaseexplainbelow)

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Page17:ThemeSeven:Connectiontopolicymakers

JPNDprovidesasingleinternationalframeworkthroughwhichtohighlightimportantcurrentandemergingissuesforpolicyconsiderationatthenationallevel.OneofthekeyaimsofJPNDistopromotecompatibilitybetweenthepolicyapproachesofdifferentcountries.TherearetwokeytranslationalgapsinND-relatedpolicywherenationalpolicymakerscantakeactiontoimprovetheimpactofresearch,andthequalityoflife,forpatients,carersandtheirfamilies.First,betterlinkswithtechnologydevelopersareneededtoensurethatthebenefitsofnewtechnologiesandpracticesarebeingextendedtothepatientsandcarerswhomostneedthem.Second,thereisaneedfornationalpolicyframeworkstoensurethatresearchoutcomesultimatelywillleadtoeffectiveimplementationinpublichealthpolicy.

Thefollowingactivitieswillbeneededtoenhancetheprogressmadetodateandhelpaddressongoingchallenges:

A.StrengthenthecommitmentofnationalgovernmentstosupportNDresearch.

B.ExpandtheadoptionofnationalplansforND(generalorspecific).

C.Increasenationalearmarkedbudgetsfortransnationalresearch.

D.Betterfacilitateresources,fundsanddataexchangeacrossborders.

E.Adoptandharmoniseevidence-basedpoliciesandbestpracticesatthenationallevel.

F.Promoteeffectivecommunicationbetweenresearchersandpolicymakers.

G.IncreaseawarenessandunderstandingofthesocietalimpactofND.


Agree

Undecided

Disagree


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Page18:ThemeEight:Communicationandoutreach

TheresearchagendaforNDmustconnectandengagewithawiderangeofsectorsandstakeholdersforeffectivetranslationintopolicyandpractice.JPNDwillensurethatallstakeholdercommunitiesarewellinformedaboutongoingNDresearchanditsoutcomes,increasingawarenessandsupportforNDresearchamongdecisionmakers,patients,carerorganisationsandthepublic.ThisshouldalsohelptoincreaseresearchparticipationandreducedthestigmaattachedtoND.Topromotecommunicationandoutreachwithawiderangeofstakeholders,JPNDcontinuesto:

A.DisseminateNDresearchoutcomestoallstakeholdercommunitiesinaneffective,balancedandconsistentmannertoassistsuccessfultranslationintopolicyandpractice.

B.ConsulttheJPNDPPIStakeholderAdvisoryBoardregardingJPNDinitiativesandresearchoutcomes.

C.IncreaseawarenessandsupportforNDresearchamongstdecisionmakersinparticipatingcountries.

D.EncourageJPND-fundedresearcherstoengageindisseminationandoutreachactivitiesasappropriate.

E.PromotethedevelopmentofinnovativetoolstofacilitatecommunicationbetweenindividualswithND,theirfamiliesandcarers,healthcareprofessionals,andcareserviceproviders.

F.Continuetosupportdialoguewithstakeholdercommunitiesonanationalandinternationallevel.


Agree

Undecided

Disagree


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Page19:Thankyouforyourresponse

Thankyouforsubmittingyourviewsonthe2018ResearchandInnovationStrategy,weappreciateyourinputandcontribution,whichwillhelptoshapeJPND'sfutureprioritiesandinvestmentinneurodegenerativediseaseresearchoverthenext5-10yearsandbeyond.

Allconsultationquestionnairesreceivedareformallyrecordedandinaccordancewithdataprotectionyourpersonaldetailsareusedsolelyinconnectionwiththeconsultationprocess.Toviewourprivacystatementpleaseclickhere.

Documents

JPND Research and Innovation Strategy 2018: Stakeholder …€¦ · Alzheimer’s disease and other forms of dementia, a number expected to double every 20 years. By 2050, in Europe