E-Rare ERA-Net for research programmes on rare diseases

Transcription

1 E-Rare ERA-Net for research programmes on rare diseases Daria Julkowska French National Research Agency, ANR ERA-NET INFO DAY 15 December 2014,Bologna, Italy

2 What is an ERA-Net? ERA-Net = European Research Area Network To accelerate the Cooperation and Coordination of Research Activities carried out at National/Regional level To contribute to the development of European Research Area by improving coherence and coordination across Europe of such research programmes To enable national systems to take on tasks collectively that they would not have been able to tackle independently ERA-Net is a consortium of funding bodies/ministries

3 Why need for ERA-Net on rare diseases? Rare Diseases Facts: RD Research Weaknesses: Rare diseases represent major health impact and burden ± 7000 rare diseases (80% of genetic origin) Mio people affected in Europe Chronic and/or life threatening Lack of information, knowledge on natural history Absence of early diagnosis and appropriate medical care Large number of diseases Small number of patients per disease Scattering of patients all over geographical zones Clinical heterogeneity Difficulties in collecting clinical information and biological samples «Low of interest» of pharmaceutical companies

4 E-Rare-3: beyond Europe and future activities E-Rare achievements CIHR FRQS GC From 19 partners in 15 countries to 25 partners in 17 countries

5 E-Rare GOALS Coordination & Support Harmonization of national research programmes on rare diseases Enlargement and increase of inernational collaboration Development of common policies Other joint activities Joint Transnational Call General of focused topic Yearly basis

6 E-Rare Joint Activities: European research landscape Systematic exchange of information and best practices: Surveys: RD research programs RD funding Workshops: Ethics and RD Monitoring of JTC projects Strategic priorities: Definition of: Future needs for RD research programs Implementation of focused calls Partnerships: Membership in IRDiRC Infrastructures Patients associations Regulatory bodies Communication and dissemination - Newsletter Publications EU Initiatives Funding

7 E-Rare Joint Transnational Calls: FUNDING E-Rare-1 JTC 2007 X X X X X X JTC 2009 X X X X X X X X X X JTC 2011 X/X X X X X X X X X E-Rare-2 JTC 2012 (YI) X X X X X X X X X X JTC 2013 X/X X X X X X X X X X X/X X X/X X JTC 2014 X X X X X X X X X X X X/X X X X X JTC 2007: 6 call partners from 6 countries JTC 2014: 17 call partners from 16 countries Around 3000 applications - the global success rate of E-RARE proposals is 10% Since January 2008 (JTC 2007, 2009, 2011, 2012, 2013 & 2014): 56.6 Mio. to support 341 research groups in 78 research consortia

8 E-Rare Joint Transnational Calls: SCOPE Clinical studies Natural history of diseases, Registries, Databases, Genotype/ Phenotype Correla;on studies, Diagnosis/Prognosis markers Pre- clinical Therapeu=c Research Development of new therapeu;c tools, Proof- of- concept, Innova;ve biotechnology research, Drug toxico/pharmacol. Physiopathology Gene iden;fica;on, Epigene;cs, Molecular mechanisms, New animal models, Omics, Biomarkers Focused calls: Young Inves=gator Novel therapeu=c approaches

9 E-Rare Joint Transnational Calls: Procedure

10 Joint Transnational Call 2015

11 JTC 2015 E-Rare - Main achievements features and future activities JTC 2015 Co-fund call with the contribution of EC Foreseen launch December 15, 2015 Open call (topic) (rare disease not = more than 1:2000) Rare cancers, infectious diseases and some neurodegenerative diseases are excluded (see JPND calls) Minimum of 3 eligible partners from 3 different countries and max 6 partners and up to 8 if Eastern countries partner are included (additonal partners allowed if secure own funding) Collaboration with European Eastern countries is encouraged (Hungary, Latvia, Poland, Romania and Turkey) Collaboration with infrastructures is encouraged Concept for sustainability of infrastructures ini;ated by the project (e.g. registries, cohorts, biobanks, databases, etc.) and their possible interac;on with European Infrastructure Ini;a;ves must be described in the proposal

12 JTC 2015 E-Rare - Timeline achievements and future activities Launch of the call - 15 December 2014 Pre-proposal application deadline - 18 February 17:00 GMT Evaluation of pre-proposals - April 2015 Invitation for full proposal submission end of April 2015 Full proposal submission deadline 2 June 2015 Evaluation of full proposals September 2015 Communication of results October 2015

13 JTC 2015 E-Rare Useful achievements information and future & Tools activities Publication on national/regional websites Publication of al documents on E-Rare website National contact points Joint Call Secretariat Looking for collaborations module Interactive FAQ

14 JTC 2015 E-Rare Useful achievements information and future & Tools activities

15 JTC 2015 E-Rare Useful achievements information and future & Tools activities

16 E-Rare calls analysis

17 E-Rare Joint Transnational Calls: MEDICAL DOMAINS JTC ,0 Rare diseases medical domains in E- Rare calls Mean for JTC ,0 6,0 5,0 4,0 3,0 2,0 1,0 0,0 Applying consor=a Funded consor=a

18 E-Rare funded projects: PREVALENCE JTC

19 E-Rare funded projects: size of the consortium JTC Size of the consor=a in funded projects 6 N of consor=a JTC 2007 JTC 2009 JTC 2011 JTC 2012 JTC 2013 JTC 2014

20 E-Rare funded projects: Recommended vs funded JTC Country Funding Org. TOTAL pre- proposals TOTAL full proposals TOTAL recommended TOTAL funded ra=o recommended to funded Austria FWF ,73 Belgium FNRS ,80 Belgium FWO ,42 Canada FRSQ ,00 Canada CIHR ,40 France ANR ,61 Germany BMBF ,55 Hungary OTKA ,00 Hungary UNI PECS ,00 Italy MOH ,72 Israel CSO- MOH ,93 Netherlands ZonMw ,58 Poland NCBR ,00 Portugal FCT ,43 Romania UEFISCDI ,00 Spain ISCIII ,85 Switzerland SNF ,38 Turkey TÜBITAK ,60 Greece GSRT ,00 total:

21 E-Rare calls: Oversubscrition rate JTC ,0 Oversubscrip=on (full proposals) 6,0 requested/earmarked budget 5,0 4,0 3,0 2,0 1,0 0,0 JTC

22 Successful consortium Excellent science Transnational Complementary Inclusion of Eastern countries positive point Justified use of infrastructures Carefully chosen partners well balanced budget

23 THANK YOU ERA-NET INFO DAY 15 December 2014,Bologna, Italy