Objective Despite examples of excellent practice, rare disease (RD) research is still mainly fragmented by data and disease types. Individual efforts have little interoperability and almost no systematic connection between detailed clinical and genetic information, biomaterial availability or research/trial datasets. By developing robust mechanisms and standards for linking and exploiting these data, RD-Connect will develop a critical mass for harmonisation and provide a strong impetus for a global “trial-ready” infrastructure ready to support the IRDiRC goals for diagnostics and therapies for RD in close collaboration with the successful A/B projects. It will build on and transform the current state-of-the-art across databases, registries, biobanks, bioinformatics, and ethical considerations to develop a quality-assured and comprehensive integrated hub/platform in which complete clinical profiles are combined with -omics data and sample availability for RD research. The integrated, user-friendly RD-Connect platform, built on efficient informatics concepts already implemented in international research infrastructures for large-scale data management, will provide access to federated databases/registries, biobank catalogues, harmonised -omics profiles, and cutting-edge bioinformatics tools for data analysis. All patient data types will be linked via the generation of a unique identifier (“RD-ID”) developed jointly with the US NIH. The RD-Connect platform will be one of the primary enablers of progress in IRDiRC-funded research and will facilitate gene discovery, diagnosis and therapy development. RD-Connect has the RD field at its heart and brings together partners with a strong track record in RD research (gene discovery and development of innovative treatments), as well as committed IRDiRC funding partners and representatives of all major international RD initiatives (EU/US/AU/JP) spanning patient organisations, research and public health, to maximise impact to RD patients Fields of science natural sciencescomputer and information sciencesdata sciencemedical and health scienceshealth sciencespublic health Programme(s) FP7-HEALTH - Specific Programme "Cooperation": Health Topic(s) HEALTH.2012.2.1.1-1-C - Databases, biobanks and 'clinical bio-informatics' hub for rare diseases Call for proposal FP7-HEALTH-2012-INNOVATION-1 See other projects for this call Funding Scheme CP-IP - Large-scale integrating project Coordinator UNIVERSITY OF NEWCASTLE UPON TYNE Address Kings gate NE1 7RU Newcastle upon tyne United Kingdom See on map Region North East (England) Northumberland and Tyne and Wear Tyneside Activity type Higher or Secondary Education Establishments Administrative Contact Rory Deane (Mr.) Links Contact the organisation Opens in new window Website Opens in new window EU contribution € 1 792 012,00 Participants (31) Sort alphabetically Sort by EU Contribution Expand all Collapse all FUNDACIO PARC CIENTIFIC DE BARCELONA Spain EU contribution € 215 856,90 Address Baldiri i reixac 4 08028 Barcelona See on map Region Este Cataluña Barcelona Activity type Research Organisations Administrative Contact Marta Molina (Ms.) Links Contact the organisation Opens in new window Website Opens in new window UNIVERSITE D'AIX MARSEILLE France EU contribution € 956 116,00 Address Boulevard charles livon 58 le pharo 13284 Marseille See on map Region Provence-Alpes-Côte d’Azur Provence-Alpes-Côte d’Azur Bouches-du-Rhône Activity type Higher or Secondary Education Establishments Administrative Contact Céline Damon (Mrs.) Links Contact the organisation Opens in new window ISTITUTO SUPERIORE DI SANITA Italy EU contribution € 792 272,93 Address Viale regina elena 299 00161 Roma See on map Region Centro (IT) Lazio Roma Activity type Research Organisations Administrative Contact Rosa Maria Martoccia (Dr.) Links Contact the organisation Opens in new window Website Opens in new window UPPSALA UNIVERSITET Sweden EU contribution € 659 794,88 Address Von kraemers alle 4 751 05 Uppsala See on map Region Östra Sverige Östra Mellansverige Uppsala län Activity type Higher or Secondary Education Establishments Administrative Contact Josepine Fernow (Ms.) Links Contact the organisation Opens in new window Website Opens in new window ACADEMISCH ZIEKENHUIS LEIDEN Netherlands EU contribution € 838 422,00 Address Albinusdreef 2 2333 ZA Leiden See on map Region West-Nederland Zuid-Holland Agglomeratie Leiden en Bollenstreek Activity type Higher or Secondary Education Establishments Administrative Contact Ruud Esveld (Mr.) Links Contact the organisation Opens in new window Website Opens in new window FUNDACION SECTOR PUBLICO ESTATAL CENTRO NACIONAL INVESTIGACIONES ONCOLOGICAS CARLOS III Participation ended Spain EU contribution € 407 454,28 Address C melchor fernandez almagro 3 28029 Madrid See on map Region Comunidad de Madrid Comunidad de Madrid Madrid Activity type Research Organisations Administrative Contact Lilit Manukyan (Ms.) Links Contact the organisation Opens in new window Website Opens in new window FONDAZIONE TELETHON ETS Italy EU contribution € 573 618,40 Address Via varese 16/b 00185 Roma See on map Region Centro (IT) Lazio Roma Activity type Research Organisations Administrative Contact Irene Mearelli (Dr.) Links Contact the organisation Opens in new window Website Opens in new window UNIVERSIDADE DE AVEIRO Portugal EU contribution € 474 900,31 Address Campus universitário de santiago 3810-193 Aveiro See on map Region Continente Centro (PT) Região de Aveiro Activity type Higher or Secondary Education Establishments Administrative Contact Fernando Batista (Dr.) Links Contact the organisation Opens in new window Website Opens in new window KAROLINSKA INSTITUTET Sweden EU contribution € 256 548,24 Address Nobels vag 5 17177 Stockholm See on map Region Östra Sverige Stockholm Stockholms län Activity type Higher or Secondary Education Establishments Administrative Contact Agneta Häggström (Ms.) Links Contact the organisation Opens in new window Website Opens in new window PANEPISTIMIO PATRON Greece EU contribution € 470 550,00 Address University campus rio patras 265 04 Rio patras See on map Region Κεντρική Ελλάδα Δυτική Ελλάδα Αχαΐα Activity type Higher or Secondary Education Establishments Administrative Contact George Patrinos (Prof.) Links Contact the organisation Opens in new window Website Opens in new window EURORDIS - RARE DISEASES EUROPE France EU contribution € 512 652,00 Address Rue didot 96 75014 Paris See on map Region Ile-de-France Ile-de-France Paris Activity type Other Administrative Contact Patrice Regnier (Mr.) Links Contact the organisation Opens in new window Website Opens in new window INTERACTIVE BIOSOFTWARE SAS France EU contribution € 393 799,20 Address 141 boulevard de l'yser 76000 Rouen See on map Region Normandie Haute-Normandie Seine-Maritime Activity type Private for-profit entities (excluding Higher or Secondary Education Establishments) Administrative Contact Juliette Renauld (Ms.) Links Contact the organisation Opens in new window Website Opens in new window FINOVATIS France EU contribution € 367 504,00 Address 62 rue de bonnel 69003 Lyon See on map Region Auvergne-Rhône-Alpes Rhône-Alpes Rhône Activity type Private for-profit entities (excluding Higher or Secondary Education Establishments) Administrative Contact David Koubi (Dr.) Links Contact the organisation Opens in new window Website Opens in new window INSTITUTO DE SALUD CARLOS III Spain EU contribution € 382 632,00 Address Monforte de lemos 5 28029 Madrid See on map Region Comunidad de Madrid Comunidad de Madrid Madrid Activity type Research Organisations Administrative Contact Miguel Angel Cabo (Mr.) Links Contact the organisation Opens in new window Website Opens in new window INNOLYST INC CORPORATION PATIENTCROSSROADS Participation ended United States EU contribution € 89 217,32 Address Warren road 180 94401 San mateo ca See on map Activity type Private for-profit entities (excluding Higher or Secondary Education Establishments) Administrative Contact Kyle Brown (Mr.) Links Contact the organisation Opens in new window Website Opens in new window MEDIZINISCHE UNIVERSITAT GRAZ Austria EU contribution € 262 244,40 Address Neue stiftingtalstrasse 6 8010 Graz See on map Region Südösterreich Steiermark Graz Activity type Higher or Secondary Education Establishments Administrative Contact Michaela Maryhofer (Dr.) Links Contact the organisation Opens in new window Website Opens in new window Université Paris Diderot-Paris 7 France EU contribution € 166 284,00 Address Rue thomas mann F-75205 / 13 Paris See on map Activity type Higher or Secondary Education Establishments Administrative Contact Anne Bonvalet (Ms.) Links Contact the organisation Opens in new window Website Opens in new window UNIVERSITA TA MALTA Malta EU contribution € 80 992,00 Address Tal oroqq 2080 Msida See on map Region Malta Malta Malta Activity type Higher or Secondary Education Establishments Administrative Contact Mark Debono (Mr.) Links Contact the organisation Opens in new window Website Opens in new window FONDATION MALADIES RARES France EU contribution € 71 611,36 Address Rue didot 96 75014 Paris See on map Region Ile-de-France Ile-de-France Paris Activity type Other Administrative Contact Nicolas Levy (Prof.) Links Contact the organisation Opens in new window UNIVERSITAET ULM Germany EU contribution € 89 400,00 Address Helmholtzstrasse 16 89081 Ulm See on map Region Baden-Württemberg Tübingen Ulm, Stadtkreis Activity type Higher or Secondary Education Establishments Administrative Contact Frank Gleixner (Mr.) Links Contact the organisation Opens in new window Website Opens in new window UNIVERSITAT ZURICH Switzerland EU contribution € 89 700,00 Address Ramistrasse 71 8006 Zurich See on map Region Schweiz/Suisse/Svizzera Zürich Zürich Activity type Higher or Secondary Education Establishments Administrative Contact Nenad Blau (Prof.) Links Contact the organisation Opens in new window Website Opens in new window UNIVERZITA KARLOVA Czechia EU contribution € 85 568,40 Address Ovocny trh 560/5 116 36 Praha 1 See on map Region Česko Praha Hlavní město Praha Activity type Higher or Secondary Education Establishments Administrative Contact Ivana Funkova (Mrs.) Links Contact the organisation Opens in new window Website Opens in new window United States Department of Health and Human Services United States EU contribution € 0,00 Address Independence avenue s. w. 200 20201 Washington d.c. See on map Activity type Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments) Administrative Contact Stephen Groft (Dr.) Links Contact the organisation Opens in new window Website Opens in new window MURDOCH UNIVERSITY Australia EU contribution € 0,00 Address South street 90 6150 Murdoch perth See on map Activity type Higher or Secondary Education Establishments Administrative Contact David Morrison (Prof.) Links Contact the organisation Opens in new window Website Opens in new window DEPARTMENT OF HEALTH GOVERNMENT OF WESTERN AUSTRALIA Australia EU contribution € 0,00 Address Royal street 189 6004 East perth See on map Activity type Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments) Administrative Contact Hughes Dawkins (Prof.) Links Contact the organisation Opens in new window Website Opens in new window EUROPEAN MOLECULAR BIOLOGY LABORATORY Germany EU contribution € 178 832,22 Address Meyerhofstrasse 1 69117 Heidelberg See on map Region Baden-Württemberg Karlsruhe Heidelberg, Stadtkreis Activity type Research Organisations Administrative Contact Tom Ratcliff (Mr.) Links Contact the organisation Opens in new window Website Opens in new window BIOBANKS AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC) Austria EU contribution € 98 176,00 Address Neue stiftingtalstrasse 2/b/6 8010 Graz See on map Region Südösterreich Steiermark Graz Activity type Research Organisations Administrative Contact Markus Pasterk (Mr.) Links Contact the organisation Opens in new window Website Opens in new window ACADEMISCH ZIEKENHUIS GRONINGEN Netherlands EU contribution € 138 364,00 Address Hanzeplein 1 9713 GZ Groningen See on map Region Noord-Nederland Groningen Overig Groningen Activity type Higher or Secondary Education Establishments Administrative Contact Johanna Van Apeldoorn (Ms.) Links Contact the organisation Opens in new window Website Opens in new window FUNDACIO CENTRE DE REGULACIO GENOMICA Spain EU contribution € 1 286 062,30 Address Carrer doctor aiguader 88 08003 Barcelona See on map Region Este Cataluña Barcelona Activity type Research Organisations Administrative Contact Pedro Corral (Mr.) Links Contact the organisation Opens in new window Website Opens in new window BARCELONA SUPERCOMPUTING CENTER CENTRO NACIONAL DE SUPERCOMPUTACION Spain EU contribution € 263 525,86 Address Calle jordi girona 31 08034 Barcelona See on map Region Este Cataluña Barcelona Activity type Research Organisations Administrative Contact Ezequiel Mas Del Molino (Dr.) Links Contact the organisation Opens in new window Website Opens in new window STICHTING RADBOUD UNIVERSITEIT Netherlands EU contribution € 3 000,00 Address Houtlaan 4 6525 XZ Nijmegen See on map Region Oost-Nederland Gelderland Arnhem/Nijmegen Activity type Higher or Secondary Education Establishments Administrative Contact Annelies Van Ravestijn (Dr.) Links Contact the organisation Opens in new window Website Opens in new window
