Health-RI Stakeholders Meeting Op weg naar één nationale infrastructuur voor Personalized Medicine& Health Research 10 mei 2016 Beatrixgebouw, Jaarbeurs Utrecht 1 First national meeting on Personalized Medicine & Research Infrastructures Working together on an NL- Infrastructure for Personalized Medicine 1
Connecting Researchers, Patients and Enabling Technologies http://www.nlhealthresearch.nl Precision/personalized/ P4 medicine staatelders hoogop de agenda 2
Personalized medicine &health Personalized medicine: drugs CROs etc. 3
Personalized medicine: biomarkers X the omics revolution CROs etc. Personalized medicine: biomarkers the unsexy problem samples images data the omics revolution process & QA 4
research care innovation Kwaliteit is nog onvoldoende geborgd 5
Conflicterende eisen: open access vs maximale privacy bescherming 6
FRAGMENTATION Data sharing I would like to exploit common genotypephenotype relations between Alzheimer s Disease and Huntington s Disease I need to combine AD and HD data I can help with that! Source: Marco Roos 7
Data interoperabiliteit is meer dan technische standaarden??? Here s my data, have fun! Here s my data, have fun! Source: Marcos Roos data sharing 2011 8
Generic problems in PM research Tsunami of genomic and clinical data Islands of information Sustainability No standard language IT systems do not interoperate 9
miracle cooking 10
Personalized medicine &health Participant/ patient enters Clinical/Biobank Procedures Questionnaire EHR Imaging Samples Experiments Phenotype database Image database & analysis Biobank catalogue Experimental data Data Integration External data Downstream analysis Scientific Output Intellectual Property Improved Healthcare Participant Interaction 11
Participant/ patient enters Clinical/Biobank Procedures Questionnaire EHR Imaging Samples Experiments Phenotype database Image database & analysis Biobank catalogue Experimental data Data Integration External data Downstream analysis Scientific Output Intellectual Property Improved Healthcare Participant Interaction Office suite for PM research 12
15-7-2016 25 15 juli 2016 13
Participant/ patient enters Clinical/Biobank Procedures Questionnaire EHR Imaging Samples Experiments Phenotype database Image database & analysis Biobank database Experimental data Data Integration External data Downstream analysis Scientific Output Intellectual Property Improved Healthcare Participant Interaction The fragmented NL landscape Internationale community Veel diverse partijen OC&W Ministeries EZ VWS Funding anders dan ESFRI ZonMW NWO Patiëntenorganisaties Diverse patiëntenorganisaties Standaardisatie instituten Partners in PPP Diverse collectzbusfondsen Overlegplatforms NEN NICTIZ CRO s Pharma FP7 / FP8 IMI BMS.NL DTL Ziekenhuizen PSI/Life Lines Diverse andere ziekenhuizen NFU projecten Kennisorganisaties RIVM TNO Universiteiten Registratie aan de Bron Platform Klinisch Onderzoek DICA e.a. CBS Hubrecht Institute NKI UMC Utrecht Radboud MC VSNU - Beta faculteiten MKB / Spin off LUMC Erasmus MC SURF NFU Vancis/SARA/CIT e.a. Diensten binnen de UMC s, zoals LUMC- ADM Laboratorium tools / software Leveranciers escience Center VUmc UMCG EPD leveranciers IT bedrijven (IBM, Oracle, SAS etc.) TTP s Horizon 2020 AMC MUMC Grootschalige apparatuur (Philips e.a.) NGI/NBIC TI Pharma / Mondriaan Topinstituten CTMM / TraIT NL Roadmap grootschalige onderzoeksfaciliteiten / ESFRI EATRIS- NL/EATRIS NeCEN/ INSTRUCT BBMRI-NL / BBMRI LSH plaza BMM - /ECRIN BioImagingNL/ Bioimaging DTL/ ELIXIR source: NFU data4lifesciences 14
NL personalizedmedicine& health infrastructure Health RI biedt kansen Betere kwaliteit van onderzoek Internationaal competitief PM onderzoek Snellere translatie succesvollere overbrugging innovation gap Kosten effectieve implementatie Pers Med Sneller leads voor ziekte mechanismen vinden Ziekte onderzoek -> -> Gezondheidsonderzoek Technologie platforms IT ontwikkeling en toepassing 15
NL leidend in PM medicine& health research compacte schaal relevante populatie omvang traditie van samenwerken hoge organisatiegraad internationaal georiënteerd technologie gedreven top biomedisch onderzoek November 30, 2015 16
the past the 21st century 15-7-2016 34 17