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Derick Mitchell Biomarkapd 11092013

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A JPND presentation with emphasis on the JPND Communication Guidelines

A JPND presentation with emphasis on the JPND Communication Guidelines

Published in: Health & Medicine, Technology

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  • The challenge of addressing neurodegenerative diseases such as Alzheimer’s and Parkinson’s is a truly global one. Most neurodegenerative diseases (ND) are incurable and are strongly linked with age. Dementias alone affect more than 7 million people in Europe and their care is estimated to cost €130 billion a year. This heavy burden on the individuals with disease, their relatives, and society as a whole is a problem that will only get worse as the European population inexorably ages, and the number of people working in care continues to decrease. Close to 85% of public research funds in the EU are spent independently by Member States
  • This will be achieved by coordinating current and future approachescollaborating where appropriate sharing tools, techniques and other resources more efficiently among participating countries
  • JPND Mapping Database demonstrates the current scale and scope of ND research amongst JPND-participating countries
  • Over €100 million will be made availableJPND Joint Transnational Calls One in 2011 for €16 M - Optimization of biomarkers and harmonization of their use Two in 2012-2013 for €29 M - Risk Factors + Evaluation of HealthcareTwo in 2013-2014Centres of Excellence in Neurodegeneration (CoEN) 2011 Call for € 6M2012-13 Call for € 8M – Pathfinder “high risk, high return” projects
  • Longitudinal Cohort Studies Investigating where current member state-led or EC-supported longitudinal cohort studies can be expanded or better exploited, or new activities identifiedAnimal and Cell Models Identifying the shortcomings of currently available experimental models (both animal and cell-based) and the need for novel models and lines of interventionAssisted Living TechnologiesCollaborating with the Ambient Assisted Living Joint Programme (AAL JP) to meet ND user needs in assisted living technologiesPalliative CareA JPND Action Group is identifying ongoing regional, national and international initiatives with a relevant research focus on palliative/end-of life care, with the objective of bringing relevant groups together to identify where JPND can make an impact.User and Public InvolvementJPND is drafting guidelines for appropriate involvement of patients and public in JPND initiatives, and in relevant national plansMention?:Aligning the optimisation of biomarkers and harmonizing their usein clinical studies 2011 Joint Transnational Call (€16 million – 4 projects funded)
  • JPND-supported projects and activities are encouraged to take part in various activities to bring JPND-supported research to the attention of as many relevant people as possible, including dissemination, communication and exploitation. ‘Dissemination andCommunication’ are more than just an additional reporting burden. Communicating about JPND research which involves several JPND member countries aims to demonstrate the ways in which JPND research is contributing to future economic growth and jobs on a national and European level, and should also account for public spending by providing tangible proof that collaborative research adds value by:showing how international collaboration has achieved more than would have otherwise been possible, notably in achieving scientific excellence, contributing to competitiveness and tackling the challenge of neurodegenerative diseases.showing how the research outcomes are relevant to the public’s everyday lives, by (for example) creating jobs, making patient and carers’ lives more comfortable, alleviating economic + social burden.making better use of the results, by making sure they are taken up by decision-makers to influence policy-making and by industry and the scientific community to ensure follow-up. Strategically-planned communication with these objectives in mind is significantly different to ad hoc efforts for the sake of meeting contractual requirements.
  • The JPND acknowledgement should be used to reference JPND on any scientific report or publication as part of a JPND-supported project:
  • Where appropriate, the following standard text should be used to both reference JPND and describe its work, particularly in non-scientific publications and press releases, and externally hosted websites:
  • The JPND Communications Executive is available to receive any relevant content which can be distributed through these online tools. Final decision on the suitability of content rests with JPND Communications. The Communications Executive can also assist with interactions with journalists and media professionals, on request:Communications ChecklistJPND Success StoriesJPND Fact SheetsFeatured Research
  • Transcript

    • 1. EU Joint Programme - Neurodegenerative Disease Research (JPND) Coordinating approaches to research across Europe Derick Mitchell Communications Executive, JPND 13/09/2013
    • 2. We cannot tackle neurodegenerative diseases by acting as single countries Albania Austria Belgium Canada Croatia Czech Republic Denmark Finland France Germany Greece Hungary Ireland Israel Italy Luxembourg Netherlands Norway Poland Portugal Slovakia Slovenia Spain Sweden Switzerland Turkey United Kingdom JPND is a global research initiative led by EU countries, with 27 participating EU member states Associated countries Third countries increasing coordination of national research programmes to improve impact and effectiveness
    • 3. JPND brings together…. • Researchers (Basic, Clinical, Healthcare/Social) • National Funding Bodies • National Research Strategies and Investments • Current JPND strategy: • To increase coordinated investment in ND research aimed at finding causes of disease, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases • Immediate JPND goals: • To add value to national investments through coordinated action • To encourage the development of national research strategies in ND • To engage in partnership to reach the full potential of JPND
    • 4. JPND currently partly-supported by FP7-JUMPAHEAD (GA. 260774) Management Board 27 countries represented Members mandated to act Chair Philippe Amouyel - France Executive Board Vice-Chair Adriana Maggi - Italy Enda Connolly - Ireland Edvard Beem - Netherlands Mogens Horder - Denmark Scientific Advisory Board 18 Members Chosen for scientific excellence, competence Organisation Steering Committee Executive Board + Rob Buckle - UK Rainer Girgenrath - Germany Melike Sevimli - Turkey
    • 5. European Research Landscape • Greatest amount of funds are available through national government budgets: • 2011 Total ND Research Funding: 1.621 Billion • Basic research: 1.362 Billion • Clinical research: 183 Million • Healthcare/Social Research: 76 Million • JPND Research Strategy Goals • 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 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)
    • 6. How can JPND reach its goals? • Alignment of research in Member Countries • Partnership with European Commission • Partnership with Industry • Partnership with other international organisations • Involvement of Patients and Public
    • 7. JPND Actions to date • Common European Strategy • Phase I Implementation (2012-2014) • Transnational Calls • Alignment Actions • National Plans and Strategies • Communication + Dissemination
    • 8. Alignment Actions • Action Groups have begun in priority areas: • Longitudinal Cohort Studies • Animal and Cell Models • Assisted Living Technologies • Palliative Care • Patient and Public Involvement in Research
    • 9. The Next Challenges • To continue implementation beyond phase I • To partner with the European Commission • To partner with Industry • To ensure JPND sustainability
    • 10. Dissemination and Communication Guidelines
    • 11. JPND Acknowledgement • To reference JPND on any scientific report or publication as part of a JPND-supported project This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organisations under the aegis of JPND - www.jpnd.eu (list of national/regional organisations who are funding the project, by country, in alphabetical order)
    • 12. BIOMARKAPD • Canada, Canadian Institutes of Health Research • Denmark, Danish Council for Strategic Research • Finland, Academy of Finland • France, French National Research Agency • Germany, Bundesministerium für Bildung und Forschung • Greece, Ministry of Education, Life Long Learning & Religious Affairs • Ireland, Health Research Board • Italy, Italian Ministry of Health • Luxembourg, Fonds National de la Recherche • Netherlands, The Netherlands Organisation for Health Research and Development • Norway, The Research Council of Norway • Poland, Ministry of Science and Higher Education • Portugal, Foundation for Science and Technology • Slovakia, Ministry of Education, Science, Research and Sport • Slovenia, Ministry of Higher Education, Science and Technology • Spain, Instituto de Salud Carlos III • Sweden, Swedish Research Council • Switzerland, Swiss National Science Foundation • Turkey, The Scientific & Technological Research Council of Turkey
    • 13. Standard Text • To reference JPND and describe its work • non-scientific publications, press releases, websites • The EU Joint Programme – Neurodegenerative Disease Research (JPND) is the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases - www.jpnd.eu
    • 14. Translated versions • Hrvatski / Croatian • Italiano / Italian • Ceský / Czech • Norske / Norwegian • Dansk / Danish • Polsk / Polish • Nederlands / Dutch • Português / Portuguese • Suomi / Finnish • Slovensky / Slovak • Français / French • Slovenski / Slovenian • Deutsch / German • Español / Spanish • ελληνικά / Greek • Svenska / Swedish • Türkçe / Turkish
    • 15. Online Tools
    • 16. 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: secretariat@jpnd.eu dmitchell@hrb.ie • Follow us on Twitter: @JPNDEurope