THE FUTURE OF MEDICAL DATA SHARING
IN CLINICAL NEUROSCIENCES

Mathew Birdsall Abrams is Head of Science and Training at the International Neuroinformatics Coordinating Facility (INCF), an organization dedicated to developing collaborative neuroinformatics infrastructure and standards, as well as promoting the sharing of data and computing resources to the international research community. For the last 5 years, Mathew has worked with an international group of scientists developing standards, data models, and infrastructure that support neuroimaging, electrophysiology, modeling, and the digital brain atlasing communities. Before joining INCF, Mathew was a researcher in the Department of Neuroscience at Karolinska Institute where his research involved the use of rodent models of traumatic spinal cord injury.

Katrin Amunts did a postdoctoral fellowship at the C. & O. Vogt Institute of Brain Research at Duesseldorf University, Germany. In 1999, she set up a new research unit for Brain Mapping at the Research Center Juelich, Germany. In 2004, she became professor for Structural-Functional Brain Mapping, and in 2008 a full professor at the Department of Psychiatry, Psychotherapy and Psychosomatics at the RWTH Aachen University as well as director of the Institute of Neuroscience and Medicine (INM-1) at the Research Center Juelich. Since 2013, she is a full professor for Brain Research, director of the C. and O. Vogt Institute of Brain Research, Heinrich-Heine University Duesseldorf and director of the Institute of Neuroscience and Medicine (INM-1), Research Center Juelich. Katrin Amunts is a member of the editorial board of Brain Structure and Function. She is member of the German Ethics Council since 2012, and has been elected as vice chair in 2016. Katrin Amunts is the programme speaker of the programme Decoding the Human Brain of the Helmholtz Association, Germany. She is leading Subproject 2 Human Brain Organization of the European Flagship Project The Human Brain Project (HBP). In 2016, she has been elected as Scientific Research Director and Chair of the Science and Infrastructure Board (SIB) of the HBP. Since 2017 Katrin Amunts is co-speaker of the graduate school Max-Planck School of Cognition and since 2018 she is a member of the International Advisory Council Healthy Brains for Healthy Lives, Canada. In order to better understand the organizational principles of the human brain, she and her team aim to develop a multi-level and multi-scale brain atlas, and use methods of high-performance computing to generate ultra-high resolution human brain models.

Jan Bjaalie, M.D., Ph.D., is professor at the Institute of Basic Medical Sciences, University of Oslo, and Infrastructure Operations Director and leader of the Neuroinformatics Platform of the EU Human Brain Project. He was founding Executive Director of the International Neuroinformatics Coordinating Facility (INCF) and is currently head of the INCF Norwegian Node and member of the INCF Council for Training, Science, and Infrastructure. His research group has studied wiring patterns of the brain and developed data systems for organizing and managing heterogeneous neuroscience research data by use of a new generation of digital brain atlases. The group develops software and workflows for analysis of data integrated in the atlases. Jan Bjaalie is Chief editor of Frontiers in Neuroinformatics and Section editor of Brain Structure and Function.

Paul Boon is Senior Full Professor of Neurology and Director of Neuroscience at Ghent University, Belgium. He is also Chair of the Department of Neurology and Chair of the Division of Head, Movement and Senses at Ghent University Hospital Ghent, as well as Professor of Neuromodulation, at Eindhoven University of Technology. As a Board Member and former Chair of the EAN Programme Committee, he has actively contributed to the annual EAN congresses. He has also previously served as Co-Chair of the EAN Scientific Panel on Epilepsy, member of the European Journal of Neurology Editorial Board, and as a member of the EAN Scientific Committee. He is a Fellow of the European Academy of Neurology (FEAN) and EAN President Elect. Prof. Boon’s main neurological interests are clinical epilepsy, neurological sleep disorders, quantitative EEG and MEG analysis, neuromodulation and functional neuroimaging. He founded the 4Brain Laboratory for Clinical and Experimental Neurophysiology, Neurobiology and Neuropsychology at Ghent University.

Erika Borcel is a passionate neuroscientist who works at CHUV hospital in Switzerland. She got a PhD. in Neurosciences and after a successful career in academia as a researcher, she decided to move one step beyond the laboratory towards project management in clinical environments. Since 2019, she works as project manager for the HBP’s Medical Informatics Platform and the Human Intracerebral EEG Platform, leading the coordination of the deployment at both operational and administrative levels and being responsible for the legal and ethics affairs.

Dr. Kristian Steen Frederiksen is the co-chair of the EAN Dementia and cognitive disorders scientific panel. Dr. Frederiksen is a neurologist at the Danish Dementia Research Centre and a director of the Trial Unit, and an active scientist within the dementia field.

Parallel Session 1: Dementia | EAN Scientific Panel on Dementia

The number of patients with dementia is estimated to increase given the aging population. This will lead to a number of challenges in the future in terms of diagnosis and care for patients with dementia. To meet these needs such as early diagnsosis and development of prognostic biomarkers, large datasets, such as the federated datasets on dementia. The EAN Dementia and cognitive disorders scientific panel can play an important role as coordinator and connecting panel members who wish to participate in e.g. consortia.

Minos Garofalakis is the Director of the Information Management Systems Institute (IMSI) at the ATHENA Research and Innovation Centre and a Professor of Computer Science at the School of Electrical & Computer Engineering of the Technical University of Crete (TUC), where he also directs the Software Technology and Network Applications Lab (SoftNet). Previously, he was a Principal Research Scientist at Yahoo! Research in Santa Clara, California (2007-2008), and an Adjunct Associate Professor of Computer Science at the University of California, Berkeley (2006-2008). He also held positions as a Senior Researcher at Intel Research Berkeley (2005-2007), and a Member of Technical Staff at Bell Laboratories (1998-2005). He got his PhD in Computer Science from the University of Wisconsin-Madison in 1998. Minos' research interests lie in the broad areas of Big Data analytics and large-scale Machine Learning/Data Mining. His work has resulted in 36 US Patent filings for companies such as Lucent, Yahoo!, and AT&T. GoogleScholar gives over 15000 citations to his work, and an h-index value of 66. Minos is an ACM Fellow (2018, "for contributions to data processing and analytics"), an IEEE Fellow (2017, "for contributions to data streaming analytics"), and a recipient of the TUC Research Excellence Award (2015), the 2009 IEEE ICDE Best Paper Award, the Bell Labs President's Gold Award (2004), and the Bell Labs Teamwork Award (2003).

During his master in Computer Science from University of Florence in 2007 Stefano Gorini worked at CERN in the IT Department collaborating with Alice experiment for his master thesis. He now works at the Swiss National Supercomputing Centre as HPC Operation Group Lead. His Team is in charge of a private Cloud (Openstack based), few HPC Parallel File System (mainly Spectrum Scale based), Backup infrastructure (Spectrum Protect) and the entire Network of the center (Ethernet and Infiniband). In "his previous life" he has been a Computer Scientist with a strong passion on Storage and System administration. Since 2014 he is also part of the board of HPCXXL, an international user group for sites which have large supercomputing and storage installations.

Affiliation: HPC Operation Group Lead, Swiss National Supercomputing Centre (ETHZ-CSCS)

Data safety in FENIX Infrastructure

In this talk the speakers will give a brief introduction of the Fenix Infrastructure and Service Offering, before focusing on Data Safety. The speaker will take the participants through the ETHZ-CSCS offering for EBRAINS and all the HBP Communities highlighting the Infrastructure role in a service implementation in respect of Security. Particular attention will be on showing what tools ETHZ-CSCS provides to a Portal/Service provider such as EBRAINS, MIP/HIP, TVB, NRP amongst others. Finally there will be given a quick glimpse into the future and the role that “multi-tenancy” will play.

Yannis Ioannidis is a Professor at the Department of Informatics and Telecommunications of the National and Kapodistrian University of Athens as well as an Associated Faculty at the “Athena” Research and Innovation Center, where he also served as the President and General Director for 10 years (2011-2021). His research interests include Database and Information Systems, Data Science, Recommender Systems and Personalization, Data Infrastructures, and Human-Computer Interaction, topics on which he has published over 160 articles in leading journals and conferences and also holds three patents. His work is often inspired by and applied to data management and analysis problems that arise in industrial environments or in the context of other scientific fields (Social Sciences and Humanities, Life Sciences, Physical Sciences) and the Arts. He has been the coordinator and legal entity head of OpenAIRE, which implements the European policies on open access to research publications and data. He is the software director of the European Human Brain Project flagship initiative, and a key partner in the governmental flagship initiatives of the National Network on Climate Change and The Hellenic Precision Medicine Network on Cancer. He has also led or is currently leading the creation of new international or spin-off companies. He is an ACM and IEEE Fellow, a member of Academia Europaea, and a recipient of the ACM SIGMOD Contributions Award and several other research and teaching awards. He is also a vice chair of the European Strategy Forum on Research Infrastructures (ESFRI), the Greek delegate to ESFRI and a member of its Executive Board and a member of the strategic management board of the Greek hub of the UN Sustainable Development Solutions Network.

Melanie Leroy is part of the Human Brain Project since 2016. She works at Lille Memory clinic (France) and was involved in the Medical Informatics Platform installation, as well as in the integration of new clinical data. She is an end-user to the MIP Dementia. She conducted a PhD on the “Contribution of real world databases to improving the diagnosis and prognosis of Alzheimer's disease and frontotemporal lobar degeneration”.

MIP hands-on session &  The MIP federation in dementia:

The Medical Informatics Platform (MIP) Dementia had been installed in several memory clinics across Europe allowing them to federate their real-world databases. Research open access databases had also been integrated such as ADNI (Alzheimer’s Dementia Neuroimaging Initiative), reaching a cumulative case load of more than 5'000 patients (major cognitive disorder due to Alzheimer’s disease, other major cognitive disorder, minor cognitive disorder, controls). The statistic and machine learning tools implemented in the MIP allowed researchers to conduct easily federated analyses among Italian memory clinics (Redolfi et al. 2020) and also across borders between the French (Lille), the Swiss (Lausanne) and the Italian (Brescia) datasets.

Dr. Michaela Th. Mayrhofer (female), is a political scientist and historian by training. She was educated in Vienna, Louvain-la-Neuve, Essex and Paris. In 2010, she received her PhD from both the Ecole des Hautes Etudes en Sciences Sociales and the University of Vienna. The thesis was shortlisted by the Austrian Society for Political Science for the ‘best thesis 2010’ young scientist award.  Her academic career led her to various positions and stays at the Centre de Recherche Médecine, Sciences, Santé et Société, the University of Vienna, the Institute of Technology and Society Studies at the Alpen-Adria-Universität Klagenfurt/Vienna/Graz, the Technical University of Vienna, the Fondation Brocher and the Medical University of Graz. She was involved in the coordination of the BBMRI Preparatory Phase (2008-2013) and is experienced in national and international research projects. Recent research Fellowships comprise the Alpen-Adria-Universität Klagenfurt or the University of Newcastle. She was member of the editorial staff of the Austrian Journal of Political Science (2013-2017). Since 2018, she has been leading the Code of Conduct for Health Research initiative, which aims at developing a code along article 40 of the EU GDPR, considering the specific features of processing personal data in health research. Since 2019, she is Head of ELSI Services & Research of BBMRI-ERIC. From February to August 2020, she took on the role as Interim Co-Director General of BBMRI-ERIC. Trained in qualitative methodology and science and technology studies, her current research focus lies on the governance of the life sciences and the ethics of AI.

Giorgos Papanikos is a Principal Researcher at Athena RC, graduate of the Department of Informatics and Telecommunications, with BSc and MSc degree on Technologies of Computer Systems and Applications, from the National and Kapodistrian University of Athens (NKUA). He has been an S/W Engineer with continuous working experience since 2005, participated in multiple projects under NKUA since 2005, CITE since 2007, as a founding member, Athena RC since 2016, and a number of others as a freelancer. During his professional career he has been a member and manager of a number of design and development teams ranging in size and technologies. Currently he holds the position of Chief Technology Officer in CITE.

Parallel Session 8: Federated analytics | The MIP federated analytics

In this session the Medical Informatics Platform (MIP) federated analytics is presented. The current and future analytical tools implemented in the MIP will be detailed along with the constructs, tools, processes, and restrictions that formulate the solution provided. MIP is a platform providing advanced federated analytics for diagnosis and research in clinical neuroscience research. It is targeting clinicians, clinical scientists and clinical data scientists. It is designed to help adopt advanced analytics, explore harmonized medical data of neuroimaging, neurophysiological and medical records as well as research cohort datasets, without transferring original clinical data. It can be perceived as a virtual database that seamlessly presents aggregated data from distributed sources, provides access and analyze imaging and clinical data, securely stored in hospitals, research archives and public databases. It leverages and re-uses decentralized patient data and research cohort datasets, without transferring original data. Integrated statistical analysis tools and machine learning algorithms are exposed over harmonized, federated medical data.

Fabian Prasser is Professor of Medical Informatics at Charité – Universitätsmedizin Berlin and the Berlin Institute of Health where he heads the Medical Informatics Group. His research interests include the design of data sharing infrastructures, big data architectures for translational medicine and related data protection challenges.

Parallel Session 6: Data privacy | Risk-based data anonymization for medical research

The General Data Protection Regulation requires a risk-based approach to data anonymisation. Although a variety of methods for risk-based anonymisation of health data have been proposed in the literature, they are rarely implemented. Indeed, the challenges of robustly anonymising datasets are often underestimated. This talk will first give an overview of important aspects of health data anonymisation. It will then present software tools that can be used to implement them. Finally, concrete anonymisation methodologies involving applications of these tools in real-world health data sharing scenarios will be presented.

Jason Sakellariou is a research associate in the Athena Research and Innovation Center in Athens, Greece. Since 2018 he works on the Medical Informatics Platform (MIP) within the Human Brain Project. Mr. Sakellariou contributes to the development of the analytical tools, machine learning and statistics algorithms, of the MIP. Before that he was for three years a postdoctoral researcher at the Sony Computer Science Lab in Paris, France where he did research on new machine learning algorithms for automatic music composition. Jason Sakellariou received his BSc in fundamental physics from the University of Crete, Greece, my MSc in physics of complex systems from the Université Paris Diderot in France and his PhD in theoretical physics, entitled «Inverse inference in the asymmetric Ising model», from the Université Paris Sud in France.

Parallel Sessin 8: Federated analysis | How to build and validate a federated algorithm

The Medical Informatics Platform (MIP) is a platform providing federated analytics for diagnosis and research in clinical neuroscience research. The federated analytics is possible thanks to a distributed engine that executes computations and transfers information between the members of the federation (hospital nodes). In this talk the speaker will describe the process of designing and implementing new analytical tools, i.e. statistical and machine learning algorithms.  Mr. Sakellariou will further describe the environment in which these federated algorithms run, the challenges and the available tools, the principles that guide its design and the followed general methodology for each new algorithm. One of the most important challenges which are faced is to design these tools in a way that does not compromise the privacy of the clinical data involved. The speaker will show how to address the main questions when designing such algorithms: how to decompose and distribute the computations and what kind of information to exchange between nodes, in order to comply with the privacy constraint mentioned above. Finally, also the subject of validating these federated algorithms will be briefly touched.

In his double-role as Human Brain Project (HBP) Director General and EBRAINS CEO, Paweł Świeboda chairs the Directorate of the HBP, guiding its transition into an enduring, sustainable European research infrastructure, EBRAINS, and heads the EBRAINS AISBL in Brussels, which was established in 2019 as an international non-profit association under Belgian law. Mr Świeboda had served as Deputy Head and Head of Research of the European Political Strategy Centre (EPSC, then IDEA) at the European Commission since 2015. In this capacity, he was co-responsible for the formulation of long-term, strategic advice to the President of the Commission, focusing on economic, research and innovation issues. He has also served on the Commission’s Sounding Board on EU Science, Research and Innovation Performance. Earlier, he was Director of the EU Department at the Polish Ministry of Foreign Affairs from 2001 to 2006, and EU Advisor to the President of Poland from 1996 to 2000. He is an active member of the European and international research community and prolific contributor to the public debate on the future of Europe, emerging technologies, democracy and global governance.

After his PhD in bioinformatics at the University of Birmingham, Alex Upton completed a Marie-Curie postdoctoral position at the Bitlab group at the University of Malaga. His research there involved extensive collaboration with local hospitals, in order to analyse clinical data using computationally intensive methods to identify potential biomarkers of interest. In addition, he was involved in the proposal development and co-ordination of the training areas of the H2020 project Elixir EXCELERATE. After that, he joined ETH Scientific IT Services in 2016 as a Community Project Manager, and was involved in the Swiss national projects EnhanceR, DLCM, and openRDM.swiss. He joined the Swiss National Supercomputing Centre (CSCS) in July 2019, where he works as a Research Project Manager, and is actively involved in the European initiatives PRACE-6IP and the Human Brain Project.

Affiliation: Research Project Manager, Swiss National Supercomputing Centre (ETHZ-CSCS)

Data safety in FENIX Infrastructure

In this talk the speakers will give a brief introduction of the Fenix Infrastructure and Service Offering, before focusing on Data Safety. The speaker will take the participants through the ETHZ-CSCS offering for EBRAINS and all the HBP Communities highlighting the Infrastructure role in a service implementation in respect of Security. Particular attention will be on showing what tools ETHZ-CSCS provides to a Portal/Service provider such as EBRAINS, MIP/HIP, TVB, NRP amongst others. Finally there will be given a quick glimpse into the future and the role that “multi-tenancy” will play.

Maaike van Swieten obtained her PhD in clinical neurosciences from the University of Oxford, where she also helped set up a departmental data sharing platform. She is currently working as a data curation scientist in the EBRAINS Data and Knowledge Team. Using her broad neuroscience background working with human, non-human subjects and computational models, she is giving expert advise on data sharing according to the FAIR guiding principles. Maaike is passionate about advancing open science; she (co-)develops educational training material on data management and data sharing, and is a member of the International Brain Initiative’s Data Sharing and Standards Training Task Force.

Dr von Oertzen trained in neurology and epileptology in Bonn, Germany. He worked as a consultant Neurologist and Epileptologist at the Department of Epileptology, University of Bonn, and at the Atkinson Morley Neuroscience Centre, St. George’s Hospital and University of London, UK, prior to his appointment in Austria. His clinical and research interests are neuroimaging in Epilepsy, comorbidity in Epilepsy and Epilepsy surgery. He has published in various high ranked medical journals, written several book chapters, and is a speaker on national and international meetings. Dr von Oertzen is president of the Austrian Society of Epileptology (ÖGfE, Austrian ILAE Chapter), co-chair of the communication committee of the European Academy of Neurology (EAN), co-chair of the scientific panel for Epilepsy (EAN) as well as president of the Upper Austrian MS Society. He was awarded fellowship of the Royal Collage of Physicians (London) in 2008 as well as the fellowship of the European Academy of Neurology in 2015.

Parallel session 7: Epilepsy | EAN scientific panel on epilepsy

The epilepsy SP actively promotes and supports epilepsy-related issues as well as educational and scientific activities within the framework of EAN. Our partners ILAE/ILAE Europe, EpiCare, EPNS and AOAN are actively involved. One of the major tasks is promoting submissions of session proposals for EAN congress balancing new scientific approaches and educational need for teaching courses. Outside of congress activities, contributions to e-learning facilities on the EAN website such as registrars reading list, scales and scores and breaking news are regularly presented or updated. Particular since the COVID pandemic, publications on COVID and any issues of epilepsy or seizures are regularly screened and summarized in neurology updates. In partnership with the ILAE/ILAE Europe, several guidelines are under preparation.