Session 13 sophie_koutouzov


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  • NSC meeting Madrid 16 April 2008
  • Session 13 sophie_koutouzov

    1. 1. The E uropean R esearch A rea - Net work on rare diseases: E-Rare GIS-Institut des Maladies Rares / INSERM (Paris, France) E-Rare Coordination Unit Sophie KOUTOUZOV Support for the coordination of activities
    2. 2. E-Rare objectives <ul><li>- EC FP6 - funded project (2 Mi.€) </li></ul><ul><li>- Coordination action, 4 years ( start date: June 2006 ) </li></ul><ul><li>- Objectives : coordinate national or regional research programmes on RD and develop joint and strategic activities to: </li></ul><ul><li>Harmonize and develop synergies between national research programmes on rare diseases </li></ul><ul><li>Develop common research policy on rare diseases </li></ul><ul><li>Implement transnational research funding activities (Joint Calls) </li></ul>E-Rare: ERA-Net for research programmes on rare diseases
    3. 3. E-Rare : A consortium of 8 EU Countries Research Funding Agencies/Ministries
    4. 4. <ul><li>Systematic exchange of information and best practices </li></ul><ul><li>* Increased mutual knowledge and awareness on national RD programmes Set-up: inventory of, and comparison between, national research programmes </li></ul><ul><li>* Systemic information for research project managers Set-up: overview of ongoing RD research in Europe through customized queries to Orphanet </li></ul><ul><li>Strategic priorities </li></ul><ul><li>* WS “Opening of national programmes to more international cooperation ” Outcome: inform researchers on existing national possibilities </li></ul><ul><li>* WS “Towards a working plan for the transnational opening of programmes for Rotation and Mobility for RD and OD research” Outcome: catalogue of national possibilities / working plan paper / recommendations for E-Rare </li></ul><ul><li>* WS “ Future themes and needs for RD research funding “ Outcome: strategic analysis / priorities for E-Rare funding </li></ul><ul><li>Recommendations </li></ul><ul><li>* WS “ Database management systems and biobanks ” Outcome: information and help for researchers to scale-up quality of proposed systems </li></ul>E-Rare achievements and successes (1)
    5. 5. E-Rare achievements and successes (2) <ul><li>Joint Transnational Activities: </li></ul><ul><li>2 Joint Transnational Calls (JTCs) for research projects on rare diseases </li></ul><ul><li> </li></ul><ul><li>* JTC participating countries : </li></ul><ul><li> - 2007 (Fr, It, Ger, Sp, Turk, Isr) (6 MS) </li></ul><ul><li> - 2008-2009 (Fr, It, Ger, Sp, Turk, Isr, Nether, Port, Aust, Gre ) (10 MS) </li></ul><ul><li> * Launch and completion : </li></ul><ul><li> - 2007 March 2007 – Nov 2007 </li></ul><ul><li>- 2008-2009 Dec 2008 – Dec 2009 </li></ul>
    6. 6. Clinical studies Epidemiology / Natural history of diseases Registries, databases, biomarkers, diagnosis/prognosis markers Rare cancers, rare drug effects, clinical trials E-Rare JTCs for research in RD: A broad medical and scientific scope Human & Social Sciences Genetics / Physiopathology Gene/mutation search, epigenetics, molecular mechanisms, new animal models, omics, biomarkers, development of new therapeutic tools Pre-clinical Therapeutic Research Proof-of-concept, therapeutic targets, innovative biotechn. research, drug toxico/pharmacol.
    7. 7. Nb of research groups / country Nb of eligible projects Numbers of research groups in eligible proposals JTC 2007 vs. JTC 2009 Total Nb of research groups Nb of research groups/proposal
    8. 8. Funding of successful research groups JTC 2007 vs JTC 2009 Number of funded research teams/country 68 73 NB OF CONSORTIA (PROPOSED) NB OF CONSORTIA (FUNDED) JTC 2007 JTC 2009 NB OF CONSORTIA (PROPOSED) NB OF CONSORTIA (FUNDED)
    9. 9. Medical specialties JTC 2007 vs JTC 2009 Eligible proposals Successful proposals Neurology Hematol./Immunol. Metabolic dis. Cardiology Dermatology Dysmorphology Ophtalmology Pulmonary dis. Gastroenterology Nephrology Rheumatology Endocrinology Otolaryngology Psychiatry/Psychol. Sensory dis. Systemic dis. Cancer Musculoskeletal dis. JTC 2009 JTC 2007 JTC 2009 JTC 2007
    10. 10. <ul><li>2 Moi € from the EC for E-Rare coordination activities = « glue money » </li></ul><ul><li>A « virtual » common pot filled by E-Rare JTC partners (MS money) </li></ul><ul><li>- each participating country (i.e., National Funding Agencies/Ministries ) puts funds in the « pot » = earmarked budget </li></ul><ul><li>- each participating call partner country finances its national research teams within selected joint research projects </li></ul><ul><li>Hence, the need to match level of « national » funding with « national » research strength </li></ul>Funds in and funding, E-Rare JTCs
    11. 11. ( M€ ) ( € ) JTC 2009 Oversubscription in eligible proposals (JTC2009) Austria France Germany Greece Israel Italy Portugal Spain Netherlands Turkey Available budget Funded for E-Rare JTC budget
    12. 12. <ul><li>Success of the E-Rare Joint Transnational Calls reflects expectations and needs of the transnational RD research community </li></ul><ul><ul><ul><li>Satisfactory general process for a call with size of ≈ 120-150 proposals, but unsatisfactory success rate (≈ 10%) (compared to the very high amount of work on part of the applicants and agencies) </li></ul></ul></ul><ul><ul><ul><li>Easy inclusion of new partners to a call (AU, GR, PT) due to updated call documents and procedures of high quality that meet international standards </li></ul></ul></ul><ul><ul><ul><li>The transnational calls have managed to leverage funds from agencies which do not have a national programme on rare diseases </li></ul></ul></ul>E-Rare JTCs : lessons learnt
    13. 13. Continuation/Extension of E-Rare: E-Rare-2 (2010-2014) E-Rare-2 12 Countries 15 Full Partners 1 Affiliated Partner      
    14. 14. Aims and objectives of E-Rare-2 (2010-2014) <ul><ul><li>Aim: </li></ul></ul><ul><li>- develop a wide transnational RD research programme </li></ul><ul><ul><li>Objectives: </li></ul></ul><ul><li>- widen European cooperation by including additional partners </li></ul><ul><li>- establish E-Rare as a European portal for funding joint transnational research on rare diseases </li></ul><ul><li> * Increase of internal and external communication </li></ul><ul><li> * Set up a series of indicators (for funded projects and quality of E-Rare) </li></ul><ul><li>* launch yearly JTCs (2 x large scope-open and 2 X smaller thematically restricted calls…) </li></ul><ul><li> * develop the current funding philosophy of E-Rare 2 towards a strategic research policy (increase of national funds) </li></ul><ul><li> * increase and diversify activities of E-Rare 2 (clinical trials?) </li></ul><ul><li> * develop plans for sustainability of the E-Rare 2 network </li></ul>
    15. 15. <ul><ul><li>Thank you for your attention! </li></ul></ul><ul><li> </li></ul>Coordination action 2006