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EJP RD SIGNED

European Joint Programme on Rare Diseases

Total Cost €

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EC-Contrib. €

0

Partnership

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 EJP RD project word cloud

Explore the words cloud of the EJP RD project. It provides you a very rough idea of what is the project "EJP RD" about.

pillars    improvement    sharing    clinical    settings    2009    outcomes    service    centers    world    health    structuration    prolonged    decrease    recommendation    efficacious    networks    care    rd    context    linking    benefit    virtuous    actions    omics    maximize    competitiveness    concerted    rare    massive    generation    types    medical    efficacy    social    sustainable    overcome    innovation    p3    integration    scientific    interpretation    reuse    ejp    faster    financial    model    coupled    fragmentation    economic    p1    council    diseases    coordinated    suffering    hardship    as    progress    materials    adapting    supporting    services    profit    151    unnecessary    tests    promotion    international    fundamental    capacity    building    epidemiological    joint    patients    central    prime    demonstration    area    assisted    p2    introduction    ecosystem    circle    appears    data    efficient    reference    tools    02    effort    accelerated    p4    translation    scaling   

Project "EJP RD" data sheet

The following table provides information about the project.

Coordinator
INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE 

Organization address
address: RUE DE TOLBIAC 101
city: PARIS
postcode: 75654
website: www.inserm.fr

contact info
title: n.a.
name: n.a.
surname: n.a.
function: n.a.
email: n.a.
telephone: n.a.
fax: n.a.

 Coordinator Country France [FR]
 Total cost 100˙176˙062 €
 EC max contribution 55˙073˙831 € (55%)
 Programme 1. H2020-EU.3.1.3. (Treating and managing disease)
 Code Call H2020-SC1-2018-Single-Stage-RTD
 Funding Scheme COFUND-EJP
 Starting year 2019
 Duration (year-month-day) from 2019-01-01   to  2023-12-31

 Partnership

Take a look of project's partnership.

# participants  country  role  EC contrib. [€] 
1    INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE FR (PARIS) coordinator 12˙066˙181.00
2    ZORGONDERZOEK NEDERLAND ZON NL (DEN HAAG) participant 2˙899˙566.00
3    DEUTSCHES ZENTRUM FUER LUFT - UND RAUMFAHRT EV DE (KOELN) participant 2˙686˙817.00
4    AGENCE NATIONALE DE LA RECHERCHE FR (PARIS) participant 2˙479˙350.00
5    ACADEMISCH ZIEKENHUIS LEIDEN NL (LEIDEN) participant 2˙048˙753.00
6    EUROPEAN MOLECULAR BIOLOGY LABORATORY DE (HEIDELBERG) participant 1˙899˙849.00
7    MINISTERO DELLA SALUTE IT (ROMA) participant 1˙635˙350.00
8    BIOBANKS AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC) AT (GRAZ) participant 1˙620˙071.00
9    ACADEMISCH ZIEKENHUIS GRONINGEN NL (GRONINGEN) participant 1˙372˙748.00
10    UNIVERSITY OF LEICESTER UK (LEICESTER) participant 1˙367˙695.00
11    STICHTING KATHOLIEKE UNIVERSITEIT NL (NIJMEGEN) participant 1˙082˙879.00
12    FUNDACIO CENTRE DE REGULACIO GENOMICA ES (BARCELONA) participant 1˙046˙730.00
13    JOHANN WOLFGANG GOETHE-UNIVERSITATFRANKFURT AM MAIN DE (FRANKFURT AM MAIN) participant 1˙015˙552.00
14    EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION FR (Paris) participant 930˙665.00
15    FONDAZIONE TELETHON IT (ROMA) participant 929˙539.00
16    FONDATION MALADIES RARES FR (PARIS) participant 908˙920.00
17    AIT AUSTRIAN INSTITUTE OF TECHNOLOGY GMBH AT (WIEN) participant 887˙811.00
18    TURKIYE BILIMSEL VE TEKNOLOJIK ARASTIRMA KURUMU TR (ANKARA) participant 824˙162.00
19    INSTITUTO DE SALUD CARLOS III ES (MADRID) participant 765˙898.00
20    EATRIS ERIC NL (AMSTERDAM) participant 751˙476.00
21    ISTITUTO SUPERIORE DI SANITA IT (ROMA) participant 723˙382.00
22    SCHWEIZERISCHER NATIONALFONDS ZUR FORDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG CH (Bern) participant 714˙035.00
23    ASSISTANCE PUBLIQUE HOPITAUX DE PARIS FR (PARIS) participant 648˙480.00
24    VETENSKAPSRADET - SWEDISH RESEARCH COUNCIL SE (STOCKHOLM) participant 645˙050.00
25    UNIVERSITATSKLINIKUM HEIDELBERG DE (HEIDELBERG) participant 643˙196.00
26    UNIVERSITEIT MAASTRICHT NL (MAASTRICHT) participant 620˙221.00
27    EBERHARD KARLS UNIVERSITAET TUEBINGEN DE (TUEBINGEN) participant 611˙511.00
28    ACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAM NL (AMSTERDAM) participant 583˙336.00
29    FONDS VOOR WETENSCHAPPELIJK ONDERZOEK-VLAANDEREN BE (BRUSSEL) participant 575˙425.00
30    FONDAZIONE REGIONALE PER LA RICERCA BIOMEDICA IT (MILANO) participant 547˙900.00
31    FONDS ZUR FÖRDERUNG DER WISSENSCHAFTLICHEN FORSCHUNG AT (WIEN) participant 524˙000.00
32    SUOMEN AKATEMIA FI (HELSINKI) participant 512˙750.00
33    NARODOWE CENTRUM BADAN I ROZWOJU PL (WARSZAWA) participant 499˙625.00
34    MINISTRY OF HEALTH IL (JERUSALEM) participant 476˙942.00
35    MINISTRY OF EDUCATION YOUTH AND SPORTS CZ (Prague) participant 470˙400.00
36    UNIVERSITAETSKLINIKUM AACHEN DE (AACHEN) participant 445˙550.00
37    VERKET FOR INNOVATIONSSYSTEM SE (STOCKHOLM) participant 439˙300.00
38    ECRIN EUROPEAN CLINICAL RESEARCH INFRASTRUCTURE NETWORK FR (PARIS) participant 418˙573.00
39    CONSORZIO PER VALUTAZIONI BIOLOGICHE E FARMACOLOGICHE IT (BARI) participant 414˙662.00
40    UNIVERSIDAD POLITECNICA DE MADRID ES (MADRID) participant 341˙571.00
41    THE HEALTH RESEARCH BOARD IE (DUBLIN) participant 332˙130.00
42    CHARITE - UNIVERSITAETSMEDIZIN BERLIN DE (BERLIN) participant 319˙056.00
43    INSERM TRANSFERT SA FR (PARIS) participant 315˙000.00
44    FONDS NATIONAL DE LA RECHERCHE LU (ESCH-SUR-ALZETTE) participant 283˙492.00
45    FONDS DE LA RECHERCHE SCIENTIFIQUE- FNRS BE (BRUXELLES) participant 248˙260.00
46    ACIBADEM UNIVERSITESI TR (ISTANBUL) participant 223˙365.00
47    NEMZETI KUTATASI FEJLESZTESI ES INNOVACIOS HIVATAL HU (BUDAPEST) participant 190˙025.00
48    MINISTERO DELL'ISTRUZIONE, DELL'UNIVERSITA' E DELLA RICERCA IT (ROMA) participant 185˙086.00
49    INFRAFRONTIER GMBH DE (NEUHERBERG) participant 182˙756.00
50    FONDAZIONE PER LA RICERCA FARMACOLOGICA GIANNI BENZI ONLUS IT (VALENZANO BARI) participant 178˙255.00
51    TEDDY - EUROPEAN NETWORK OF EXCELLENCE FOR PAEDIATRIC CLINICAL RESEARCH IT (PAVIA) participant 173˙113.00
52    HELIOS DR. HORST SCHMIDT KLINIKEN WIESBADEN GMBH DE (WIESBADEN) participant 167˙107.00
53    REGIONE TOSCANA IT (FIRENZE) participant 152˙400.00
54    LUDWIG BOLTZMANN GESELLSCHAFT GMBH AT (WIEN) participant 144˙410.00
55    FUNDACAO PARA A CIENCIA E A TECNOLOGIA PT (LISBOA) participant 143˙325.00
56    BLACKSWAN FOUNDATION CH (VUARRENS) participant 136˙412.00
57    VIESOJI ISTAIGA VILNIAUS UNIVERSITETO LIGONINE SANTAROS KLINIKOS LT (VILNIUS) participant 133˙364.00
58    SLOVENSKA AKADEMIA VIED SK (BRATISLAVA) participant 127˙005.00
59    UNIVERSITAETSKLINIKUM FREIBURG DE (FREIBURG) participant 126˙584.00
60    ST. ANNA KINDERKREBSFORSCHUNG AT (WIEN) participant 113˙610.00
61    Lietuvos mokslo taryba LT (Vilnius) participant 99˙388.00
62    INSTYTUT POMNIK CENTRUM ZDROWIA DZIECKA PL (WARSZAWA) participant 87˙155.00
63    KATHOLIEKE UNIVERSITEIT LEUVEN BE (LEUVEN) participant 85˙037.00
64    WARSZAWSKI UNIWERSYTET MEDYCZNY PL (WARSZAWA) participant 81˙255.00
65    ISTITUTO ORTOPEDICO RIZZOLI IT (BOLOGNA) participant 77˙661.00
66    GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUST UK (LONDON) participant 76˙728.00
67    THE UNIVERSITY OF LIVERPOOL UK (LIVERPOOL) participant 69˙711.00
68    UNIVERSITY OF NEWCASTLE UPON TYNE UK (NEWCASTLE UPON TYNE) participant 66˙412.00
69    CONSORCIO CENTRO DE INVESTIGACION BIOMEDICA EN RED M.P. ES (MADRID) participant 61˙853.00
70    SOTSIAALMINISTEERIUM EE (TALLINN) participant 55˙575.00
71    HACETTEPE UNIVERSITESI TR (CANKAYA ANKARA) participant 51˙271.00
72    SERVICIO MADRILENO DE SALUD ES (MADRID) participant 48˙405.00
73    GDANSKI UNIWERSYTET MEDYCZNY PL (GDANSK) participant 43˙840.00
74    THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST UK (NEWCASTLE-UPON-TYNE) participant 42˙011.00
75    CENTRE DE LUTTE CONTRE LE CANCER LEON BERARD FR (LYON) participant 28˙061.00
76    ERASMUS UNIVERSITAIR MEDISCH CENTRUM ROTTERDAM NL (ROTTERDAM) participant 24˙622.00
77    IMAGINE INSTITUT DES MALADIES GENETIQUES NECKER ENFANTS MALADES FONDATION FR (PARIS 15) participant 23˙537.00
78    AZIENDA OSPEDALIERA UNIVERSITARIA SENESE IT (SIENA) participant 21˙223.00
79    GENIKI GRAMMATIA EREVNAS KAI TECHNOLOGIAS EL (ATHENS) participant 20˙658.00
80    INSTITUTO NACIONAL DE SAUDE DR. RICARDO JORGE PT (LISBOA) participant 14˙026.00
81    AZIENDA OSPEDALIERO UNIVERSITARIA PISANA IT (PISA) participant 12˙311.00
82    HOPITAUX UNIVERSITAIRES DE STRASBOURG FR (STRASBOURG CEDEX) participant 11˙900.00
83    VALSTS IZGLITIBAS ATTISTIBAS AGENTURA LV (RIGA) participant 10˙185.00
84    ASS FRANCAISE CONTRE LES MYOPATHIES FR (PARIS) participant 5˙162.00
85    EUROPEAN ORGANISATION FOR RESEARCH AND TREATMENT OF CANCER AISBL BE (Brussels) participant 5˙162.00
86    CANADIAN INSTITUTES OF HEALTH RESEARCH CA (OTTAWA ONTARIO) participant 0.00
87    DEUTSCHE FORSCHUNGSGEMEINSCHAFT DE (BONN) participant 0.00
88    FONDS DE RECHERCHE DU QUEBEC - SANTE CA (MONTREAL QUEBEC) participant 0.00

Map

 Project objective

As recognized by the Council Recommendation 2009/C 151/02, rare diseases (RD) are a prime example of a research area that can strongly profit from coordination on a European and international scale. RD research should be improved to overcome fragmentation, leading to efficacious use of data and resources, faster scientific progress and competitiveness, and most importantly to decrease unnecessary hardship and prolonged suffering of RD patients. In the specific context of the massive generation, need for reuse and efficient interpretation of data, introduction of omics into care practice and the structuration of RD care centers in European Reference Networks, it appears crucial and timely to maximize the potential of already funded tools and programmes by supporting them further, scaling up, linking, and most importantly, adapting them to the needs of end-users through implementation tests in real settings. Such a concerted effort is necessary to develop a sustainable ecosystem allowing a virtuous circle between RD care, research and medical innovation. To achieve this goal, the European Joint Programme on RD (EJP RD) has two major objectives: (i) To improve the integration, the efficacy, the production and the social impact of research on RD through the development, demonstration and promotion of Europe/world-wide sharing of research and clinical data, materials, processes, knowledge and know-how; (ii) To implement and further develop an efficient model of financial support for all types of research on RD (fundamental, clinical, epidemiological, social, economic, health service) coupled with accelerated exploitation of research results for benefit of patients. To this end, the EJP RD actions will be organized within four major Pillars assisted by the central coordination: (P1): Funding of research; (P2): Coordinated access to data and services; (P3) Capacity building; (P4): Accelerated translation of research projects and improvement outcomes of clinical studies.

 Publications

year authors and title journal last update
List of publications.
2020 Annika Jacobsen, Rajaram Kaliyaperumal, Luiz Olavo Bonino da Silva Santos, Barend Mons, Erik Schultes, Marco Roos, Mark Thompson
A Generic Workflow for the Data FAIRification Process
published pages: 56-65, ISSN: 2641-435X, DOI: 10.1162/dint_a_00028
Data Intelligence 2/1-2 2020-04-25
2020 Annalisa Landi, Mark Thompson, Viviana Giannuzzi, Fedele Bonifazi, Ignasi Labastida, Luiz Olavo Bonino da Silva Santos, Marco Roos
The “A” of FAIR – As Open as Possible, as Closed as Necessary
published pages: 47-55, ISSN: 2641-435X, DOI: 10.1162/dint_a_00027
Data Intelligence 2/1-2 2020-04-25
2020 Annika Jacobsen, Ricardo de Miranda Azevedo, Nick Juty, Dominique Batista, Simon Coles, Ronald Cornet, Mélanie Courtot, Mercè Crosas, Michel Dumontier, Chris T. Evelo, Carole Goble, Giancarlo Guizzardi, Karsten Kryger Hansen, Ali Hasnain, Kristina Hettne, Jaap Heringa, Rob W.W. Hooft, Melanie Imming, Keith G. Jeffery, Rajaram Kaliyaperumal, Martijn G. Kersloot, Christine R. Kirkpatrick, Tobias K
FAIR Principles: Interpretations and Implementation Considerations
published pages: 10-29, ISSN: 2641-435X, DOI: 10.1162/dint_r_00024
Data Intelligence 2/1-2 2020-04-25

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