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
city: NEWCASTLE UPON TYNE
postcode: NE1 7RU

contact info
Titolo: Mr.
Nome: Rory
Cognome: Deane
Email: send email
Telefono: +44 191 2824514
Fax: +44 191 2824524

 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

# participant  country  role  EC contrib. [€] 
1    UNIVERSITY OF NEWCASTLE UPON TYNE

 Organization address address: Kensington Terrace 6
city: NEWCASTLE UPON TYNE
postcode: NE1 7RU

contact info
Titolo: Mr.
Nome: Rory
Cognome: Deane
Email: send email
Telefono: +44 191 2824514
Fax: +44 191 2824524

UK (NEWCASTLE UPON TYNE) coordinator 1˙500˙500.40
2    FUNDACIO PRIVADA PARC CIENTIFIC DE BARCELONA

 Organization address address: Baldiri i Reixac, 10-12
city: BARCELONA
postcode: 8028

contact info
Titolo: Ms.
Nome: Marta
Cognome: Molina
Email: send email
Telefono: +34 93 4020542

ES (BARCELONA) participant 1˙500˙600.00
3    UNIVERSITE D'AIX MARSEILLE

 Organization address address: Boulevard Charles Livon 58
city: Marseille
postcode: 13284

contact info
Titolo: Mrs.
Nome: Céline
Cognome: Damon
Email: send email
Telefono: +33 4 91998595
Fax: +33 4 91 99 85 99

FR (Marseille) participant 959˙776.00
4    ISTITUTO SUPERIORE DI SANITA

 Organization address address: Viale Regina Elena 299
city: ROMA
postcode: 161

contact info
Titolo: Dr.
Nome: Rosa Maria
Cognome: Martoccia
Email: send email
Telefono: +39 06 4990 2688
Fax: +39 06 4990 3007

IT (ROMA) participant 849˙920.20
5    ACADEMISCH ZIEKENHUIS LEIDEN

 Organization address address: Albinusdreef 2
city: LEIDEN
postcode: 2333 ZA

contact info
Titolo: Mr.
Nome: Ruud
Cognome: Esveld
Email: send email
Telefono: +31 71 5269566
Fax: +31 715268275

NL (LEIDEN) participant 787˙469.00
6    FUNDACION CENTRO NACIONAL DE INVESTIGACIONES ONCOLOGICAS CARLOS III

 Organization address address: CALLE MELCHOR FERNANDEZ ALMAGRO 3
city: MADRID
postcode: 28029

contact info
Titolo: Ms.
Nome: Lilit
Cognome: Manukyan
Email: send email
Telefono: 34912246900
Fax: +34 912246980

ES (MADRID) participant 675˙600.15
7    UPPSALA UNIVERSITET

 Organization address address: SANKT OLOFSGATAN 10 B
city: UPPSALA
postcode: 751 05

contact info
Titolo: Ms.
Nome: Josepine
Cognome: Fernow
Email: send email
Telefono: +46 184 716222
Fax: +46 184 716675

SE (UPPSALA) participant 663˙750.00
8    FONDAZIONE TELETHON

 Organization address address: VIA VARESE 16/B
city: ROMA
postcode: 185

contact info
Titolo: Dr.
Nome: Irene
Cognome: Mearelli
Email: send email
Telefono: +39 06 44015308
Fax: 390644000000

IT (ROMA) participant 581˙250.00
9    EURORDIS - EUROPEAN ORGANISATION FOR RARE DISEASES ASSOCIATION

 Organization address address: RUE DIDOT 96
city: Paris
postcode: 75014

contact info
Titolo: Mr.
Nome: Patrice
Cognome: Regnier
Email: send email
Telefono: +33 156 535210
Fax: +33 156 535215

FR (Paris) participant 520˙500.00
10    KAROLINSKA INSTITUTET

 Organization address address: Nobels Vag 5
city: STOCKHOLM
postcode: 17177

contact info
Titolo: Ms.
Nome: Agneta
Cognome: Häggström
Email: send email
Telefono: +46 8 52486199

SE (STOCKHOLM) participant 487˙500.00
11    UNIVERSIDADE DE AVEIRO

 Organization address address: CAMPO UNIVERSITARIO DE SANTIAGO
city: AVEIRO
postcode: 3810-193

contact info
Titolo: Dr.
Nome: Fernando
Cognome: Batista
Email: send email
Telefono: +351 23 4370200

PT (AVEIRO) participant 487˙500.00
12    UNIVERSITY OF PATRAS

 Organization address address: UNIVERSITY CAMPUS RIO PATRAS
city: RIO PATRAS
postcode: 26500

contact info
Titolo: Prof.
Nome: George
Cognome: Patrinos
Email: send email
Telefono: +30 2610 969834
Fax: +30 2610 969834

EL (RIO PATRAS) participant 472˙650.00
13    INTERACTIVE BIOSOFTWARE SARL

 Organization address address: AVENUE DE LA PORTE DES CHAMPS 9
city: ROUEN
postcode: 76000

contact info
Titolo: Ms.
Nome: Juliette
Cognome: Renauld
Email: send email
Telefono: +33 276 781051
Fax: +33 972 252572

FR (ROUEN) participant 440˙400.00
14    FINOVATIS

 Organization address address: COURS LAFAYETTE 68
city: LYON
postcode: 69003

contact info
Titolo: Dr.
Nome: David
Cognome: Koubi
Email: send email
Telefono: +33 4 78 54 79 40

FR (LYON) participant 405˙000.00
15    INSTITUTO DE SALUD CARLOS III

 Organization address address: CALLE SINESIO DELGADO 4-6
city: MADRID
postcode: 28029

contact info
Titolo: Mr.
Nome: Miguel Angel
Cognome: Cabo
Email: send email
Telefono: +34 918222764

ES (MADRID) participant 397˙410.00
16    EUROPEAN MOLECULAR BIOLOGY LABORATORY

 Organization address address: Meyerhofstrasse 1
city: HEIDELBERG
postcode: 69117

contact info
Titolo: Mr.
Nome: Tom
Cognome: Ratcliff
Email: send email
Telefono: +44 1223 492528

DE (HEIDELBERG) participant 225˙000.00
17    INNOLYST INC CORPORATION PATIENTCROSSROADS

 Organization address address: WARREN ROAD 180
city: SAN MATEO CA
postcode: 94401

contact info
Titolo: Mr.
Nome: Kyle
Cognome: Brown
Email: send email
Telefono: +1 650 6788929

US (SAN MATEO CA) participant 221˙739.25
18    Medizinische Universitaet Graz

 Organization address address: AUENBRUGGERPLATZ 2
city: GRAZ
postcode: 8036

contact info
Titolo: Dr.
Nome: Michaela
Cognome: Maryhofer
Email: send email
Telefono: +43 316 380 7657
Fax: +43 316 384 329

AT (GRAZ) participant 199˙800.00
19    UNIVERSITE PARIS DIDEROT - PARIS 7

 Organization address address: RUE THOMAS MANN 5
city: PARIS
postcode: 75205

contact info
Titolo: Ms.
Nome: Anne
Cognome: Bonvalet
Email: send email
Telefono: +33 1 57275559
Fax: +33 1 57276662

FR (PARIS) participant 168˙750.00
20    UNIVERSITA TA MALTA

 Organization address address: University Campus, Tal-Qroqq
city: MSIDA
postcode: 2080

contact info
Titolo: Mr.
Nome: Mark
Cognome: Debono
Email: send email
Telefono: +356 2340 2222
Fax: +3 562 1333430

MT (MSIDA) participant 91˙996.00
21    FONDATION MALADIES RARES

 Organization address address: RUE DIDOT 96
city: PARIS
postcode: 75014

contact info
Titolo: Prof.
Nome: Nicolas
Cognome: Levy
Email: send email
Telefono: +33 1 58142281
Fax: +33 1 58142288

FR (PARIS) participant 90˙000.00
22    UNIVERSITAET ULM

 Organization address address: HELMHOLTZSTRASSE 16
city: ULM
postcode: 89081

contact info
Titolo: Mr.
Nome: Frank
Cognome: Gleixner
Email: send email
Telefono: +49 731 50066397
Fax: +49 731 50066392

DE (ULM) participant 90˙000.00
23    UNIVERSITAET ZUERICH

 Organization address address: Raemistrasse 71
city: ZURICH
postcode: 8006

contact info
Titolo: Prof.
Nome: Nenad
Cognome: Blau
Email: send email
Telefono: +41 44 2667539

CH (ZURICH) participant 90˙000.00
24    UNIVERZITA KARLOVA V PRAZE

 Organization address address: Ovocny trh 5
city: PRAHA 1
postcode: 11636

contact info
Titolo: Mrs.
Nome: Ivana
Cognome: Funkova
Email: send email
Telefono: +420 2 24433501
Fax: +4 202 24433520

CZ (PRAHA 1) participant 90˙000.00
25    DEPARTMENT OF HEALTH GOVERNMENT OF WESTERN AUSTRALIA

 Organization address address: ROYAL STREET 189
city: EAST PERTH
postcode: 6004

contact info
Titolo: Prof.
Nome: Hughes
Cognome: Dawkins
Email: send email
Telefono: +61 8 92226888

AU (EAST PERTH) participant 0.00
26    MURDOCH UNIVERSITY

 Organization address address: SOUTH STREET 90
city: MURDOCH PERTH
postcode: 6150

contact info
Titolo: Prof.
Nome: David
Cognome: Morrison
Email: send email
Telefono: +61 89360 2414

AU (MURDOCH PERTH) participant 0.00
27    United States Department of Health and Human Services

 Organization address address: Independence Avenue S. W. 200
city: Washington D.C.
postcode: 20201

contact info
Titolo: Dr.
Nome: Stephen
Cognome: Groft
Email: send email
Telefono: +1 301 4356041
Fax: +1 301 4809655

US (Washington D.C.) participant 0.00

Mappa


 Word cloud

Esplora la "nuvola delle parole (Word Cloud) per avere un'idea di massima del progetto.

disease    patient    databases    data    omics    types    trial    connect    irdirc    bioinformatics    international    gene    registries    rd    discovery    us    platform    ready    clinical    profiles   

 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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