RD-CONNECT
"RD-CONNECT: An integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research"
| Coordinatore | UNIVERSITY OF NEWCASTLE UPON TYNE
Organization address
address: Kensington Terrace 6 contact info |
| Nazionalità Coordinatore | United Kingdom [UK] |
| Totale costo | 17˙677˙586 € |
| EC contributo | 11˙997˙111 € |
| Programma | FP7-HEALTH
Specific Programme "Cooperation": Health |
| Code Call | FP7-HEALTH-2012-INNOVATION-1 |
| Funding Scheme | CP-IP |
| Anno di inizio | 2012 |
| Periodo (anno-mese-giorno) | 2012-11-01 - 2018-10-31 |
Partecipanti
| # | ||||
|---|---|---|---|---|
| 1 |
UNIVERSITY OF NEWCASTLE UPON TYNE
Organization address
address: Kensington Terrace 6 contact info |
UK (NEWCASTLE UPON TYNE) | coordinator | 1˙500˙500.40 |
| 2 |
FUNDACIO PRIVADA PARC CIENTIFIC DE BARCELONA
Organization address
address: Baldiri i Reixac, 10-12 contact info |
ES (BARCELONA) | participant | 1˙500˙600.00 |
| 3 |
UNIVERSITE D'AIX MARSEILLE
Organization address
address: Boulevard Charles Livon 58 contact info |
FR (Marseille) | participant | 959˙776.00 |
| 4 |
ISTITUTO SUPERIORE DI SANITA
Organization address
address: Viale Regina Elena 299 contact info |
IT (ROMA) | participant | 849˙920.20 |
| 5 |
ACADEMISCH ZIEKENHUIS LEIDEN
Organization address
address: Albinusdreef 2 contact info |
NL (LEIDEN) | participant | 787˙469.00 |
| 6 |
FUNDACION CENTRO NACIONAL DE INVESTIGACIONES ONCOLOGICAS CARLOS III
Organization address
address: CALLE MELCHOR FERNANDEZ ALMAGRO 3 contact info |
ES (MADRID) | participant | 675˙600.15 |
| 7 |
UPPSALA UNIVERSITET
Organization address
address: SANKT OLOFSGATAN 10 B contact info |
SE (UPPSALA) | participant | 663˙750.00 |
| 8 |
FONDAZIONE TELETHON
Organization address
address: VIA VARESE 16/B contact info |
IT (ROMA) | participant | 581˙250.00 |
| 9 |
EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION
Organization address
address: RUE DIDOT 96 contact info |
FR (Paris) | participant | 520˙500.00 |
| 10 |
KAROLINSKA INSTITUTET
Organization address
address: Nobels Vag 5 contact info |
SE (STOCKHOLM) | participant | 487˙500.00 |
| 11 |
UNIVERSIDADE DE AVEIRO
Organization address
address: CAMPO UNIVERSITARIO DE SANTIAGO contact info |
PT (AVEIRO) | participant | 487˙500.00 |
| 12 |
UNIVERSITY OF PATRAS
Organization address
address: UNIVERSITY CAMPUS RIO PATRAS contact info |
EL (RIO PATRAS) | participant | 472˙650.00 |
| 13 |
INTERACTIVE BIOSOFTWARE SARL
Organization address
address: AVENUE DE LA PORTE DES CHAMPS 9 contact info |
FR (ROUEN) | participant | 440˙400.00 |
| 14 |
FINOVATIS
Organization address
address: COURS LAFAYETTE 68 contact info |
FR (LYON) | participant | 405˙000.00 |
| 15 |
INSTITUTO DE SALUD CARLOS III
Organization address
address: CALLE SINESIO DELGADO 4-6 contact info |
ES (MADRID) | participant | 397˙410.00 |
| 16 |
EUROPEAN MOLECULAR BIOLOGY LABORATORY
Organization address
address: Meyerhofstrasse 1 contact info |
DE (HEIDELBERG) | participant | 225˙000.00 |
| 17 |
INNOLYST INC CORPORATION PATIENTCROSSROADS
Organization address
address: WARREN ROAD 180 contact info |
US (SAN MATEO CA) | participant | 221˙739.25 |
| 18 |
Medizinische Universitaet Graz
Organization address
address: AUENBRUGGERPLATZ 2 contact info |
AT (GRAZ) | participant | 199˙800.00 |
| 19 |
UNIVERSITE PARIS DIDEROT - PARIS 7
Organization address
address: RUE THOMAS MANN 5 contact info |
FR (PARIS) | participant | 168˙750.00 |
| 20 |
UNIVERSITA TA MALTA
Organization address
address: University Campus, Tal-Qroqq contact info |
MT (MSIDA) | participant | 91˙996.00 |
| 21 |
FONDATION MALADIES RARES
Organization address
address: RUE DIDOT 96 contact info |
FR (PARIS) | participant | 90˙000.00 |
| 22 |
UNIVERSITAET ULM
Organization address
address: HELMHOLTZSTRASSE 16 contact info |
DE (ULM) | participant | 90˙000.00 |
| 23 |
UNIVERSITAET ZUERICH
Organization address
address: Raemistrasse 71 contact info |
CH (ZURICH) | participant | 90˙000.00 |
| 24 |
UNIVERZITA KARLOVA V PRAZE
Organization address
address: Ovocny trh 5 contact info |
CZ (PRAHA 1) | participant | 90˙000.00 |
| 25 |
DEPARTMENT OF HEALTH GOVERNMENT OF WESTERN AUSTRALIA
Organization address
address: ROYAL STREET 189 contact info |
AU (EAST PERTH) | participant | 0.00 |
| 26 |
MURDOCH UNIVERSITY
Organization address
address: SOUTH STREET 90 contact info |
AU (MURDOCH PERTH) | participant | 0.00 |
| 27 |
United States Department of Health and Human Services
Organization address
address: Independence Avenue S. W. 200 contact info |
US (Washington D.C.) | participant | 0.00 |
Mappa
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Obiettivo del progetto (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'
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