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,POLICY WHITE PAPERTOWARDS OPTIMIZINGRESEARCH AND CAREFOR BRAIN DISORDERS,V T,EBC RESEARCH PROJECT - THE VALUE OF TREATMENT FOR BRAIN DISORDERS,EARLY INTERVENTION: BRIDGING THE EARLY DIAGNOSIS AND TREATMENT GAP,2,THE VALUE OF TREATMENT FOR BRAIN DISORDERS,The European Brain Council (EBC) is a non-profit organisation gathering patient associations,major brain-related societies as well as industries. Established in March 2002, its mission is toimprove the lives of those living with brain disorders by advancing the understanding of thehealthy and diseased brain through bringing together science and society.,3,THE VALUE OF TREATMENT FOR BRAIN DISORDERS,EBC Final Conference,22 June 2017,held under the auspices of,the Maltese EU Presidency,MULTIPLE GOALS, Target unmet needs to achieve high value for patients, Conduct cost-effectiveness analysis in health care (comparing costs,and values of defined interventions) and assess the benefits ofseamless,coordinated care in the prevention and treatment,of brain disorders, Propose solutions with a societal impact and reflect,on new research developments, Release evidence-based policy recommendations,A BOTTOM-UP METHOD WITH CASE STUDIES DATA ANALYSIS AND,CONVERGENCE OF EVIDENCE TO POLICY,4,THE VALUE OF TREATMENT FOR BRAIN DISORDERSTABLE OF CONTENTS,AUTHORS PART1ACKNOWLEDGEMENTSFOREWORDEXECUTIVE SUMMARYPART 1: VALUE OFTREATMENT RESEARCH PROJECT OVERALL OBJECTIVESAND POLICY RECOMMENDATIONSBACKGROUND - WHAT ARE BRAIN DISORDERS?ABOUTTHE VALUE OFTREATMENT PROJECT1.CONTEXT1.1.Epidemiology and impact of diseases1.2.Unmet needs and treatment gaps1.3.Why early intervention is key for brain disorders1.3.1.Early detection and intervention Potential risk reduction capacity in mental health care1.3.2.Early detection and intervention Essential in neurological disorders1.3.3.Addressing stigma1.4.State of play of research initiatives and public health policies at European level1.4.1.Medical research and frameworks of action1.4.2.Public health policies and frameworks of action2.RATIONALE:VOT RESEARCH METHODOLOGY,7814162222232424262828293131313536,5,THE VALUE OF TREATMENT FOR BRAIN DISORDERS,3.KEY FINDINGS ACROSS CASE STUDIES3.1.Case studies findings3.2.Challenges to bridge the treatment gap3.2.1.Health services challenges3.2.2.Other challenges: non-adherence to treatment and unaffordableaccess to care4.CONCLUSIONS AND POLICY RECOMMENDATIONSREFERENCESPART2: SUMMARIES OFTHE CASE STUDIESAUTHORS PART2SchizophreniaRestless Legs SyndromeParkinsons disease (PD)Multiple Sclerosis (MS)StrokeNormal Pressure Hydrocephalus (NPH)HeadacheEpilepsyAlzheimers disease (AD)REFERENCESSPONSORSHIP,424254545659687374758084899497100105110113116,6,THE VALUE OF TREATMENT FOR BRAIN DISORDERS,7,THE VALUE OF TREATMENT FOR BRAIN DISORDERS,AUTHORS PART 1:,EBC team: Quoidbach V1,Esposito G1,Destrebecq F1,Kramer S1EBC academic partners:Tinelli M2,Knapp M2,Guldemond N3,Working group leaders: Dodel R4,Gaebel W5,Klviinen R6,Kehler U7,Mitsikostas D8,Srensen PS6,Trenkwalder C9,Vanhooren G10,Visser PJ11,EBC executive board: Nutt D1,Boyer P1,5,Di luca M1,12,Oertel W1,4,1. European Brain Council (EBC),2. London School of Economics (LSE),3. The Institute of Health Policy & Management (iBMG),Erasmus University4. Philipps-Universitt Marburg,5. European Psychiatric Association (EPA)6. European Academy of Neurology,7. Dept.of Neurosurgery,Asklepios Klinik Altona,Hamburg,Germany8. European Headache Federation (EHF),9. Paracelsus Elena Klinik and University of Goettingen10. European Stroke Organization (ESO)11.VU University Medical Center Amsterdam,12. Federation of European Neuroscience Societies (FENS),8,THE VALUE OF TREATMENT FOR BRAIN DISORDERSACKNOWLEDGEMENTSSchizophrenia Working Group,Wolfgang GaebelSilvana GalderisiDanuta WassermanCyril HschlPavel MohrPetr WinklerPatrice BoyerAagje IevenHilkka KrkkinenPaul ArteelAmir InamdarMeni StyliadouChristoph Van der GoltzVeronica ZilliCristiana MariaBart MalfaitKristel van ImpeKarin Becker,European Psychiatric Association (EPA)European Psychiatric Association (EPA)European Psychiatric Association (EPA)National Institute of Mental Health,Klecany,Czech Republic; 3rdFaculty of Medicine,Charles University,Prague,Czech RepublicEuropean Psychiatric Association (EPA); National Institute ofMental Health,Klecany,Czech Republic; 3rd Faculty ofMedicine,Charles University,Prague,Czech RepublicNational Institute of Mental Health,Klecany,Czech Republic;Health Service and Population Research Department,IoPPN,Kings College LondonEuropean Brain Council (EBC) and European PsychiatricAssociation (EPA)The European Federation of Families of People withMental Illness (EUFAMI)Global Alliance of Mental Illness Advocacy Networks (GAMIAN)- EuropeGlobal Alliance of Mental Illness Advocacy Networks (GAMIAN)- EuropeTakeda Development Centre,Europe,Ltd.Takeda Development Centre,Europe,Ltd.H.Lundbeck A/SJanssen EMEAJanssen EMEAJanssen-Cilag,Beerse,BelgiumJanssen EMEABoehringer Ingelheim GmbH,9,THE VALUE OF TREATMENT FOR BRAIN DISORDERSDementia Working Group,Pieter Jelle VisserSietske SikkesRon HandelsLisa VermuntPhilip ScheltensJoel BobulaCharles FaidAmir InamdarMeni StyliadouMichele PotashmanTresja BoltFrancois ChazelleBoris AzaisVeronica ZilliJan SermonCristiana MariaHeadache Working GroupDimos MitsikostasMatilde LeonardiKoen PaemeleireTimothy SteinerElena Ruiz de laTorreAnnik K Laflamme,VU University Medical Center;Amsterdam Neuroscience;Alzheimer center,Department of Neurology,VU UniversityMedical Center;Amsterdam Neuroscience; Department ofEpidemiology & Biostatistics,VU University Medical Center,Amsterdam,the NetherlandsDepartment of Psychiatry and Neuropsychology and AlzheimerCentre Limburg,School for Mental Health and Neurosciences,Maastricht University,Maastricht,The Netherlands; Departmentof Neurobiology,Care Sciences and Society,Center forAlzheimer Research,Division of Neurogeriatrics,KarolinskaInstitutet,SwedenAlzheimer center,Department of Neurology,VU UniversityMedical center;Amsterdam Neuroscience,Amsterdam,the NetherlandsVU University Medical Center;Amsterdam Neuroscience;Pfizer IncPfizer IncTakeda Development Centre,Europe,Ltd.Takeda Development Centre,Europe,Ltd.BiogenBiogenMerck Scharp & Dohme Europe Inc.(MSD)Merck Scharp & Dohme Europe Inc.(MSD)Janssen EMEAJanssen EMEAJanssen EMEAEuropean Headache FederationEuropean Brain Council (EBC) WHO Liaison; Neurology,Public Health,Disability Unit- Foundation IRCCS Neurological InstituteCarlo Besta,Milan,ItalyEuropean Headache FederationLifting the BurdenEuropean Federation of Neurological Associations (EFNA)Novartis Pharma AG,Basel,SwitzerlandTeva Pharmaceuticals,THE VALUE OF TREATMENT FOR BRAIN DISORDERSEpilepsy Working Group,Reetta KalviainenChantal DepondtTony MarsonAngela BolandRumona DicksonJames MahonPaul BoonPhilippe RyvlinJanne MartikainenAnn LittlePeter Dedeken,Epilepsy Center/Neurocenter,Kuopio University Hospital andUniversity of Eastern Finland,Kuopio,FinlandILAE; Department of Neurology,Erasme Hospital,Universit Librede Bruxelles,Brussels,BelgiumILAE; Department of Molecular and Clinical Pharmacology,University of LiverpoolLiverpool Reviews and Implementation Group (LRiG);University of LiverpoolLiverpool Reviews and Implementation Group (LRiG);University of LiverpoolLiverpool Reviews and Implementation Group (LRiG);University of LiverpoolEuropean Academy of Neurology (EAN)European Academy of Neurology (EAN);Epilepsy Alliance Europe;Department of Clinical Neurosciences,CHUV,Lausanne,SwitzerlandSchool of Pharmacy,University of Eastern Finland,Kuopio,FinlandEuropean Federation of Neurological Associations (EFNA);International Bureau for EpilepsyUCB Biopharma,Brussels,Belgium,Normal Pressure Hydrocephalus (NPH) Working Group,Uwe Kehler,Dept.of Neurosurgery,Asklepios Klinik Altona,Hamburg,Germany;International Hydrocephalus Society ISHCSF10,11,THE VALUE OF TREATMENT FOR BRAIN DISORDERSMultiple Sclerosis Working Group,Per Soelberg SorensenKerstin HellwigMaura PugliattiAndreea AntonoviciMonica MoroniBettina HausmannRob HydeEmanuele DegortesAnnik Laflamme,European Academy of Neurology (EAN); Danish MultipleSclerosis Center,Dpt.Neurology,University of CopenhagenRigshospitalet,Copenhagen,DenmarkDepartment of Neurology,St.Josef Hospital,Bochum GermanyEuropean Academy of Neurology (EAN); Dept.of Biomedicaland Surgical Sciences,University of Ferrara,ItalyEuropean Multiple Sclerosis Platform (EMSP)School of Medicine,University of Ferrara,ItalyEuropean Multiple Sclerosis Platform (EMSP)BiogenBiogenNovartis AG,Teva PharmaceuticalsRocheParkinsons Disease Working Group,Richard DodelGnther DeuschlWolfgang OertelLizzie GrahamEleanor FlanaganFrank MichlerJutta Ahmerkamp-BhmeGudula PetersenDaniela MyersCharles FaidMarja KolisSilke Walleser Autiero,European Academy of Neurology (EAN)European Academy of Neurology (EAN); Prof.Dr.med,Department of Neurology,UKSH Kiel,CAU Kiel,GermanyEuropean Academy of Neurology (EAN);Hertie Senior Professorship; Dept.Neurology,Philipps UniversityMarburg,GermanyEuropean Parkinsons Disease Association (EPDA)Grayling Belgium;European Parkinsons Disease Association (EPDA)Jung & Parkinson,GermanyJung & Parkinson,GermanyGrnenthal GmbHPfizer IncPfizer IncGrnenthal GmbHMedtronic,THE VALUE OF TREATMENT FOR BRAIN DISORDERSRestless Legs Syndrome (RLS) Working Group,ClaudiaTrenkwalderJoke JaarsmaRoselyne RijsmanGiorgios SakkasRaffaele FerriYves DauvilliersWolfgang OertelAnna Mezzacasa,Paracelsus-Elena-Klinik,Center of movement disorders,Kassel,Germany/ University of Goettingen,Goettingen,GermanyEuropean Alliance for Restless Legs Syndrome (EARLS)Center for Sleep and Wake Disorders,HaaglandenMedical Center,The Hague,The NetherlandsDepartment of Health,Plymouth Marjon University,Plymouth,UK & University ofThessaly,Trikala,GreeceDepartment of Neurology IC,Oasi Research Institute (IRCCS),Troina,ItalySleep Disorders Center,Department of Neurology,Gui-de-Chauliac Hospital,Inserm,U1061,Montpellier,FranceEuropean Academy of Neurology (EAN);Hertie Senior Professorship; Dept.Neurology,Philipps UniversityMarburg,GermanyVifor Pharma,UCB Biopharma,Brussels,Belgium12,THE VALUE OF TREATMENT FOR BRAIN DISORDERSStroke Working Group,Geert VanhoorenVincentThijsEivind BergeAlastair WebbAna Catarina FonsecaBo NorrvingValeria CasoFranz FazekasJon BarrickGary RandallStephanie RosoCharles Faid,European Stroke Organization (ESO) Department of Neurology,AZ Sint-Jan Brugge-Oostende,Brugge,BelgiumBelgian Stroke Council; Florey Institute of Neuroscience andMental Health,Melbourne University,Melbourne,AustraliaNorwegian Stroke Organization,Dept.of Internal Medicine,OsloUniversity Hospital,and Institute of Clinical Medicine,UniversityofTroms,NorwayEuropean Stroke Organisation (ESO);Department of Clinical Neuroscience,University of Oxford,UKUniversidade de Lisboa,Faculdade de Medicina,Institute ofMolecular Medicine,PortugalEuropean Stroke Organization (ESO); Dept.of Clinical SciencesLund,Neurology,Lund University,SwedenEuropean Stroke Organization (ESO)European Academy of Neurology (EAN)Stroke Alliance for Europe (SAFE)Stroke Alliance for Europe (SAFE)Pfizer Inc.Pfizer Inc.,We would like to thank Jean Georges, Dianne Goveand Ana Diaz (Alzheimer Europe) fortheir contribution to the case study on Alzheimer disease. We would also like to thankAlberto Raggi, Licia Grazzi, Domenico DAmico and Giuseppe Lauria (Foundation IRCCSNeurological Institute Carlo Besta, Milan, Italy) for their contribution to the case study onHeadache. Finally, we would like to thank Eveline Sipido (European Academy of Neurology,EAN) for her support to the entire project.We are also taking the opportunity to thank all EBC staff members for their support to theentire project.Current EBC Team Members :Frdric DESTREBECQ,Giovanni ESPOSITO,Stephanie KRAMER,Tadeusz HAWROT,Vinciane QUOIDBACH,Ccile GREBET, Vania PUTATTI and Marijn SCHOLTEPast Members :Ester BONADONNA,AlisonTURNER,Lara INGRAM and Monika KALKUSOVA13,14,THE VALUE OF TREATMENT FOR BRAIN DISORDERS,FOREWORD,Unprecedented innovation in technology and medical processes is rapidly revolutionizinghuman life.Current health systems,however,have not been able to adapt quickly enough tomaximize the value to patients.This is particularly true for brain disorders,and is particularlychallenging for policy makers.,Value-based healthcare is currently gaining traction in Europe as the desired solution orpath forward in improving health systems. This holistic approach towards seamless caremodels critically intertwines wider patient and societal outcomes with efficient spendingof resources. Doing this should lead to both a more sustainable framework for payers andimproved care for patients.,On 22 June 2017, the European Brain Council (EBC) will release the Value of Treatment(VoT) 2015-2017 Research Project Policy White Paper with case studies findings and policyrecommendations, at a final conference organized under the auspices of the MalteseEU Presidency.The Research Project is building on the EBC Report “The Economic Costs ofBrain Disorders in Europe” published in 2005 (Balak and Elmaci 2007) and updated in 2010(Gustavsson et al. 2011) that provided robust estimates of the costs of brain disorders inEurope and enlightened necessary public health policy implications for more patient-oriented and sustainable care models as well as the need for more research.This policypaper focuses on “Prevention and Early Intervention, Bridging the Early Diagnosis andTreatment Gap”.,Starting from case studies data analysis covering a wide range of brain disorders and endingin evidence-based policy recommendations, the project assesses the treatment gap andthe cost of non- or inadequate treatment. Our findings recommend early intervention andthe promotion of a holistic healthcare approach (as opposed to fragmentation in separatemedical “silos”), address combined research and public health policy gaps andopportunities at the EU level,and translate the findings into policy recommendations.,
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