The Road from Reactive Medicine to Proactive Systems P4 Medicine

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The Road from Reactive Medicine to Proactive Systems P4 Medicine Technological and Ethical Requirements for Sustainable Knowledge Management, Integration and Sharing in Translational Research and Systems Medicine CASyM workshop concept June 25th 2013 Université Claude Bernard 50, Avenue Tony Garnier Meeting room on ground floor Lyon, France

TABLE OF CONTENT INTRODUCTION AND CONCEPT... 3 AGENDA... 4 ACKNOWLEDGEMENTS... 6 NOTES... 10 2

INTRODUCTION AND CONCEPT The Coordinating Action Systems Medicine (CASyM) is an initiative of the European Commission, several European funding bodies, companies, researchers and clinicians with the objective to develop a strategic roadmap to implement Systems Medicine across Europe. Part of that process is to ensure that all stakeholders are involved and in particular that Systems Medicine is shaped by clinical needs. The objective of this workshop is to discuss the role of Technological and Ethical Requirements for Sustainable Knowledge Management, Integration and Sharing in Translational Research and Systems Medicine. The workshop will be structured in two guided round table discussions covering the following topics: Roundtable 1: Technological and infrastructure requirements for sustainable knowledge management This roundtable will review the technological and infrastructure requirements to establish a sustainable knowledge management framework to support the development of translational research and systems medicine public-private partnerships. Particular emphasis will be placed on harmonization and standards for data storage and sharing, analysis and modeling, based on the experience of ongoing research infrastructure and service projects such as ESFRI- ELIXIR, IMI-eTRIKS and FP7-ISBE and related use cases such as IMI U-BIOPRED. Roundtable 2: Ethical, legal and social issues in personal data protection and sharing This roundtable will review the ethical, legal and social issues that need to be taken into account to enable the development of translational research and systems medicine based on public-private partnerships. Particular emphasis will be on harmonization of rules for personal data protection and sharing, based on the experience of ongoing research infrastructure and service projects such as IMI-eTRIKS and related use cases such as IMI U-BIOPRED and OncoTrack. 3

AGENDA TUESDAY June 25 th, 2013 8:30-12:30 SESSION I Chair: Christophe Pison, Université Joseph Fourier-EISBM, Grenoble, France 8:30-9:00 9:00-9:45 9:45-10:30 1. Overview of CASyM and workshop goal Charles Auffray, European Institute for Systems Biology & Medicine - EISBM, France 2. Developing a systems medicine clinical platform for the management of noncommunicable diseases Alfredo Cesario, San Raffaele Hospitals, Rome, Italy 3. Systems medicine and integrated care for pulmonary disease rehabilitation. Emiel Wouters, CIRO+, University of Maastricht, The Netherlands 10:30-11:00 COFFEE BREAK 11:00-11:45 11:45-12:00 4. The hallmarks of Parkinson s disease revisited through systems biology. Rudi Balling, Center for Systems Biomedicine, Luxembourg 5. Round table methodology Drieke Vandamme, University College Dublin, Ireland 12:15-13:15 LUNCH BUFFET 4

13:15-16:30 SESSION II: ROUND TABLES IN SEPARATE ROOMS Roundtable 1: Technological and infrastructure requirements for sustainable knowledge management Chairs: Ursula Klingmüller, DKFZ, Heidelberg, Germany; Drieke Vandamme, University College Dublin, Ireland; Dieter Maier, Biomax Informatics, Planegg, Germany; Johann Pellet, CNRS-EISBM, Lyon, France; Stéphane Ballereau, CNRS-EISBM, Lyon, France; Pascale Turmel, HLA-MED-EISBM, Lyon, France. Participants Rudi Balling, Center for Systems Biomedicine, Luxembourg François-Henri Boissel, Novadiscovery, Lyon, France Alfredo Cesario, San Raffaele Hospitals, Rome, Italy Thierry de Lumley, The Cosmo Company, Lyon, France Ian Dix, Ian Dix, AstraZeneca, Manchester, United Kingdom Philippe Sabatier, UJF-EISBM, Grenoble, France Ghita Rahal, CC-IN2P3, Lyon Wolfgang Müller, SDBV group, ggmbh, Heidelberg, Germany Leroy Hood, Institute for Systems Biology, Seattle, USA Hubert Roth, Centre de Recherche en Nutrition Humaine (CRNH) Rhône-Alpes, UJF Grenoble, France Ioannis Pandis, Imperial College London, United Kingdom Stylianos Antonarakis, University of Geneva, Switzerland Nicolas Sapay, Bioaster, Lyon, France Roundtable 2: Ethical, legal and social issues in personal data protection and sharing Chairs: Anne Bahr, Sanofi, Chilly-Mazarin, France; Leila El Hadjam, CNRS-EISBM, Lyon, France; Odile Brasier, CNRS-EISBM, Lyon, France Participants Alvar Agusti, Hospital Clinic, Barcelona, Spain Pim de Boer, Asthma Fonds, Alkmaar, The Netherlands David Henderson, Bayer, Berlin, Germany Emil Lupu, Imperial College London, United Kingdom Emmanuelle Rial-Sebagg, Inserm, Toulouse, France Christophe Pison, Université Joseph Fourier-EISBM, Grenoble, France 16:30-17:00 SHORT REPORTS OF ROUND TABLE LEADERS AND RECOMMENDATIONS Anne Bahr, Sanofi, Chilly-Mazarin, France; Ursula Klingmüller, DKFZ, Heidelberg, Germany; Charles Auffray, CNRS-EISBM, Lyon, France 5

ACKNOWLEDGEMENTS This event is part of CASyM work package 3 The technological and methodological basis of Systems Medicine. CASyM is funded by the European Union, Seventh Framework Programme under the Health Cooperation Theme and Grant Agreement # 305033. STEERING COMMITTEE The following officials, as part of the Scientific Steering Committee, are involved in the scientific coordination of CASyM: Charles Auffray - European Institute for Systems Biology & Medicine - EISBM, France Mikael Benson (Deputy Speaker) - Linköping University Hospital, Sweden Rob Diemel - The Netherlands Organisation for Health Research and Development, The Netherlands David Harrison (Speaker) - University of St. Andrews, United Kingdom Walter Kolch - University College Dublin, Ireland Frank Laplace - Federal Ministry of Education and Research, Germany Francis Lévi - Institut National de la Sante et de la Recherche Medicale, France Damjana Rozman (Deputy Speaker) - University of Ljubljana, Faculty of Medicine, Slovenia Johannes Schuchhardt - MicroDiscovery GmbH, Germany Olaf Wolkenhauer - Dept. of Systems Biology & Bioinformatics University of Rostock, Germany ADMINISTRATIVE OFFICE AND COORDINATION Marc Kirschner - Project Management Jülich, Forschungszentrum Jülich GmbH, Germany ORGANIZING COMMITTEE Charles Auffray EISBM, France Pascale Turmel - HLA - MEDECINE/EISBM, France Marc Kirschner - Project Management Jülich, Forschungszentrum Jülich GmbH, Germany Supported by Fondation Finovi, Grand Lyon, Région Rhône-Alpes, Direction de la Recherche et de la Technologie; Organized by CNRS-EISBM/HLA & Médecine - Systemoscope 6

CONTACT INFORMATION Pascale Turmel HLA - MEDECINE/EISBM Université Claude Bernard 3e étage plot 2 50 Avenue Tony Garnier 69366 Lyon cedex 07, France Telephone: +33(0)4 37 28 74 94 E-mail: pturmel@eisbm.org Marc Kirschner Forschungszentrum Jülich GmbH Project Management Jülich (PtJ) 52425 Jülich, Germany Telephone: +49 2461 61-6863 Telefax: +49 2461 61-9080 E-mail: m.kirschner@fz-juelich.de MEETING VENUE UNIVERSITÉ CLAUDE BERNARD 50, Avenue Tony Garnier Lyon, France http://www.univ-lyon1.fr/ http://www.eisbm.org/ HOW TO GET THERE By plane: Lyon-Saint Exupery Airport is located 25km to the east of Lyon. Take the tram express "Rhonexpress" between Lyon St Exupery airport and the Part Dieu TGV station (less than 30 minutes). Then take the B line from station Part Dieu to station Stade de Gerland. Rhonexpress website: http://www.rhonexpress.fr/ By subway: Take the B line Metro to station Stade de Gerland. Subway website : http://www.tcl.fr/ Taxi: Taxi radio: +33 (0)4 72 10 86 86 Allo taxi: +33 (0)4 78 28 23 23 7

HOTEL AND MAPS Hotel IBIS Merieux ** (5mn walk) Tel: +33 472 726 363 246 avenue Marcel Merieux - 69007 Lyon 8

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