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Joint Programming inNeurodegenerative Disease Research (JPND)Coordinating approaches to research across EuropeAdriana MaggiVice-Chair, JPND Executive Board28/05/2013
COST OF DISORDERS OF THE BRAIN IN EUROPEEstimates in 2004Estimates in 2010(1) Referred to as “effective disorders” in 2005, (2) includes only incident cases in 2010, (3) weighted mean from all countries and diagnoses(5) including also persons with zero costs, (6) excluding indirect costs, (7) excluding PTSD(European Neuropsychopharmacology (2011) 21, 718-779)
A global health andeconomic emergency• Between now and 2050, over 680 million new cases of dementiawill be diagnosed worldwide 1• That’s 680 million people living with dementia in the next 40 years!• more than the population of all of North America (542 million) and nearly asmuch as all of Europe (738 million)• ND are the most expensive of all known diseases• Global cost of dementia in 2010 is $604 billion - 1% of global GDP 2• Current economic crisis is affecting research budgetsA global health andeconomic emergency• Between now and 2050, over 680 million new cases of dementiawill be diagnosed worldwide 1• That’s 680 million people living with dementia in the next 40 years!• more than the population of all of North America (542 million) and nearly asmuch as all of Europe (738 million)• ND are the most expensive of all known diseases• Global cost of dementia in 2010 is $604 billion - 1% of global GDP 2• Current economic crisis is affecting research budgets1 – World Alzheimer Report 20122 – WHO Dementia Report 2012
Impact of a 5-year delay onthe onset by stage ofdisease, Americans aged 65and older with AD, 2050Changing the trajectoryProportion of American Age 65 and older withAzheimer Disease by Stage of Disease 2010-2050What if we delay the onsetand progression?Cortesy M. Di Luca 2013
Changing the trajectoryCortesy M. Di Luca 2013Impact of a 5-year delay on the onset by stage of disease, Americans aged 65and older with AD, 2050
AN EPIDEMICS FORNEURODEGENERATION?INCREASING AGELACK OF THERAPIES!
We cannot tackle neurodegenerativediseases by acting as single countriesAlbaniaAustriaBelgiumCanadaCroatiaCzech RepublicDenmarkFinlandFranceGermanyGreeceHungaryIrelandIsraelItalyLuxembourgNetherlandsNorwayPolandPortugalSlovakiaSloveniaSpainSwedenSwitzerlandTurkeyUnited KingdomJPND is a global research initiativeled by countries , with 27 member states,associated countries and third countriesparticipating
What is Joint Programming?A new Member States-led initiative in Europewhich aims to address “grand challenges” toEU society by coordinating national researchprogrammes within the EU to increase theimpact and effectiveness of research efforts
JPND is currently supportedby FP7-JUMPAHEAD (GA. 260774)Management Board27 countries representedMandated to actChair Philippe Amouyel (France)Executive BoardVice-Chair Adriana Maggi (Italy)Enda Connolly (Ireland)Edvard Beem (The Netherlands)Mogens Horder (Denmark)Scientific Advisory Board18 MembersChosen for scientific excellence andcompetenceOrganisationSteering CommitteeExecutive Board+Rob Buckle (UK)Rainer Girgenrath (Germany)Nihan Eryilmaz (Turkey)
DEFRAGMENTATION, THIS ISALL WHAT JPND IS ABOUTSTRATEGIC RESEARCH AGENDAALIGNMENT OF EU COUNTRIESON COMMON RESEARCH GOALS
VALIDATEDMODELSPATHWAYSDIETCHOLESTEROLDISEASEDIAGNOSISDIETNEURONSDEFRAGMENTATION, THE JPND APPROACH
The SRA goalsTo tackle the challenge of Alzheimer’s and other neurodegenerative diseases*,the goals of the JPND Research Strategy are:* Alzheimer’s disease and other dementias (AD),Parkinson’s disease (PD) and PD-related disorders,Prion disease, motor neurone diseases (MND),Huntington’s disease (HD),Spinocerebellar ataxia (SCA),Spinal muscular atrophy (SMA)• To develop new treatments and preventive strategies• To improve health and social care approaches• To raise awareness and de-stigmatise neurodegenerative disorders• To alleviate the economic and social burden of these diseases
Implementation of the SRA Create list of priorities from JPND Research Strategy proposals Organise thematic working groups Create list of opportunities suited for implementation Stimulate and align national plans Set action groups for specific priorities and encouraging alignment Support implementation
Societal Needs Creative research(Idea Generation)Innovation(Idea Implementation)• 27 JPND Members• Member States• Assoc. Countries• Third Countries• Eur. Commission• Industry• Public and Users• Common Strategy• Transnational Calls• Alignment Actions• National Plans• Communication +Dissemination• New treatments +preventive strategies• Improved health + socialcare approaches• De-stigmatize ND• Alleviate economic andsocial burdenPARTNERSHIP ACTIONS OUTCOMESJPND ResearchBasic Clinical Healthcare/Social
What are the conditions that createa ripe environment for innovation?Joint Transnational CallsOne in 2011 for €16 MTwo in 2012-2013 for €29 MCentres of Excellence inNeurodegeneration (CoEN) program2011 for € 6M ; in 2012-13 for € 8Mnight science wanders blind. It hesitates, stumbles, recoils, sweats, wakes with astart. […] There is no way to predict whether night science will ever become dayscience; whether the prisoner will emerge from the darkness«Of flies, mice and man» Francois JacobConscious of its progress, proud of its past, sure of its future, day science advancesin light and glory
Aligning national activities• JPND Action Group to align existing national resources and initiatives• to address specific ND research questions• Focus on linkage, harmonization and data sharing between areaswith high potential for international cooperation• e.g. connecting national technology platforms or infrastructures• imaging centres• biobanking infrastructures
Aligning research strategies• Most JPND countries• No national roadmap• No identified priority actions in the field of ND research• Those who do, take different approaches• Specific research programmes• National plans targeted to an individual disease (e.g. Dementia)• National plans comprising research, service delivery, or both• Since deciding to participate in JPND…..• Denmark, Finland, Italy, Ireland working towards developing SRAs• Specific JPND actions aimed at encouraging countries to developnational research strategies in ND
Emerging nationalJPND-related activities• The Netherlands• Research a major theme as part of National Deltaplan for Dementia“…. the Deltaplan will follow closely the JPND strategic research agenda and willstrengthen the international position of the Netherlands for both research and industry”Edith Schippers, Minister for Health, Welfare and Sport• United Kingdom• David Cameron’s “Prime Minister’s challenge on dementia” includesspecific references to continued support for COEN and JPND research• Ireland• National SRA developed to inform participation in JPND• Researchers using participation in 2011 JPND Biomarkers call to initiatea national network in biomarkers for Alzheimer’s and Parkinson’s
Alignment - Actions• Action Groups have begun in priority areas:• Longitudinal Cohort Studies• addressing both disease-based and population-based cohorts• Animal and Cell Models• Assisted Living Technologies• Palliative Care• User and Public Involvement in Research
The next Challenges• To continue implementation beyond phase I• To partner with European Commission• To partner with Industry• To ensure JPND sustainability
Partnering with Industry• Substantive participation in development of JPND ResearchStrategy• Now Members of Scientific Advisory Board• Ongoing discussions with EFPIA-IMI• Enlarge the contacts (pharma, device, IT, diagnosis, imaging,welfare technologies, AAL, …)• JPND Industry Action Group to develop new public-private-partnerships
Keep up to date• Visit the JPND website:• http://www.neurodegenerationresearch.eu• http://www.jpnd.eu• Search our Mapping Database• Sign up to the JPND News Feeds• E-mail us: firstname.lastname@example.org• Follow us on Twitter: @JPNDEurope