FAIRVASC – building registry interoperability to inform clinical care

FAIRVASC consortium

 Augusto VAGLIO
Augusto VAGLIO
augusto.vaglio@meyer.it
Meyer’s Children’s Hospital, Florence, Department of Medicine
Augusto Vaglio (MEYER) is a member of the EUVAS scientific council, is secretary of the European Vasculitis Genetics Consortium, and is a coordinator of the European Study Group on Eosinophilic Granulomatosis with Polyangiitis (EGPA). He has a strong track record in the types of clinical AAV research that will be revolutionised by FAIRVASC, including projects on slowly progressive AAV, on EGPA, and in the use of genetic markers for prognosis. He has established and coordinates an Italian national multi-centre group on paediatric AAV, with over 80 cases to date. Augusto is the Management Coordinator of the FAIRVASC project.
Mark LITTLE

mlittle@tcd.ie
Trinity College Dublin Trinity Translational Medicine Institute, Trinity Centre for Health Sciences
Mark Little (TCD) leads the Registries team in EUVAS, is co-chair of the UK-Ireland Vasculitis Registry (UKIVAS) and is the strand leader for autoimmune diseases in ERN RITA. He has been working on the creation and integration of AAV registries for over a decade. He established the Vasculitis Ireland Network registry and biobank, leading to support of genome-wide association studies, development of novel AAV biomarkers and the impact of environmental triggers on autoimmune disease. Mark is the Technical Coordinator of FAIRVASC project.
Declan O’SULLIVAN (‘TCD-ADAPT’)

declan.osullivan@adaptcentre.ie
ADAPT Centre for Digital Content, O’Reilly Institute, Trinity College Dublin
Declan O’Sullivan and the team at TCD-ADAPT have extensive experience in RDF uplift and data normalisation projects across a variety of domains, including linking anti-glomerular basement membrane (anti-GBM) disease to environmental data, Geospatial data, European statistical data and rich multi-media data.
Benjamin TERRIER

benjamin.terrier@aphp.fr
French Vasculitis Study Group, Cochin Hospital, APHP, University of Paris, Department of Internal Medicine
Benjamin Terrier, MD, PhD, is a specialist in Internal Medicine, holder of a thesis in Sciences in Immunology (University Paris 6). Professor of Universities-Hospital Practitioner, he is responsible for the care of patients with systemic vasculitis in the National Reference Center for Rare Systemic Autoimmune Diseases. Benjamin Terrier is also the vice-president of the FVSG. He is involved in clinical and basic research activities concerning systemic vasculitis, in particular vasculitis associated with ANCA, cryoglobulinemia, and Behçet’s disease. Benjamin Terrier has published more than 250 scientific articles, lessons, and book chapters
Aladdin MOHAMMAD

aladdin.mohammad@med.lu.se
Lund University, Clinical Sciences, Rheumatology, Lund and Dept. of Rheumatology, Skåne University Hospital, Lund
Aladdin Mohammed at LUND has a long track record in AAV epidemiological research. LUND are currently working on several epidemiologic and outcome studies using the Southern Sweden AAV (Skane) registry of 325 patients, with focus on epidemiology AAV co-morbidity. LUND will lead the WP5 study, building on LUND’s epidemiological, statistical and data analytic expertise.
Peter LAMPRECHT

Peter.Lamprecht@uksh.de
University of Lübeck, Department of Rheumatology
Peter Lamprecht at UKSH, Campus Lübeck, has a long track in basic and clinical AVV research, especially GPA, and leads the Joint Vasculitis Registry in German-speaking countries (GeVas – Germany, Austria, Switzerland). Since its inception in June 2019, this registry has included 14 sites in Germany, documented more than 100 vasculitis patients and is driven by an active and quickly growing research community. Further sites across Germany, Austria and Switzerland are being recruited. This experience will greatly facilitate the delivery of FAIRVASC
Jacek MUSIAŁ

jacek.musial@uj.edu.pl
Jagiellonian University Krakow, Department of Medicine
Jacek Musial (Krakow) has published extensively on large and small vessel vascular disease and leads the Polish vasculitis registry POLVAS (>900 AAV cases), which underpins several national projects, notably in molecular biology of AAV. The POLVAS registry will be an important element of the FAIRVASC federated network.
Zdenka HRUŠKOVÁ

Zdenka.Hruskova@vfn.cz
General University Hospital in Prague, Department of
Nephrology

Zdenka Hruskova and the team in Prague led by Vladimir Tesar are members of ERN RITA and long-term collaborators in EUVAS research projects. They coordinate the Czech AAV registry (>1000 patients) and are involved in several important national and international research studies in epidemiology, phenotypes, outcomes, and biomarkers of AAV. This work has highlighted the need for larger cohort sizes and interoperable (FAIR) data sets.
Louis ASLETT

louis.aslett@durham.ac.uk

 Durham University
Louis Aslett is an Associate Professor of Statistics in the Department of Mathematical Sciences at Durham University.  He has particular research interests in development of methodology at the interface of cryptography and statistics to enable secure statistical modelling and also works on applied statistical machine learning for electronic health record data, leading the SPARRA project to develop a risk prediction model for emergency hospital admission in Scotland.
Neil BASU

Neil.Basu@glasgow.ac.uk
University of Glasgow, Institute of Infection, immunity & Inflamation
Dr Neil Basu is an academic rheumatologist who leads an innovative programme of research at the University of Glasgow. In particular, he leads a programme of work which investigates the epidemiology of Systemic Vasculitis. Inflammatory diseases such as systemic vasculitis are frequently overlooked due to their low prevalence. Patients feel marginalised and their true disease burden remains to be fully quantified. This programme of work seeks to apply descriptive, analytical and translational epidemiological methods to better quantify the burden and determinants of systemic vasculitis with view to informing and executing clinical trials.
Peter VERHOEVEN

pmjverhoeven@gmail.com
Vasculitis Stichting and Vasculitis International
Peter Verhoeven leads both the Dutch Vasculitis Foundation (Vasculitis Stichting) and Vasculitis International, the umbrella group for national AAV organisations. The Irish, British and Dutch members of Vasculitis International are actively involved in FAIRVASC, with the leadership of Vasculitis Stichting. Peter participates in European institutions like ERN-RITA and EURORDIS, and in a major Dutch project Called ARCH (Arthritis Research and Collaboration Hub) which includes setting up shared care solutions , running a registry and integrating patient-reported outcome measures (using AAV-PRO).
Peter also participates in projects like Target-t-b! in which a consortium of clinical, translational and fundamental research groups and companies combine their strength in immunology, hemato-oncology, diagnostics and clinical experience.
Julie POWER

vasculitisireland10@gmail.com
Vasculitis Ireland Awareness
Julie Power holds the position of Patient Contact and Policy Officer in Vasculitis Ireland Awareness (VIA) and is responsible for managing the helpline, liaising with Healthcare Professionals, researchers, Departments of Health, other patient groups, and relevant stakeholders to improve present care of vasculitis.
Julie set up VIA as a support group for patients of all the Vasculitis diseases, their carers and interested Healthcare Professionals in the island of Ireland. It has been established as a registered charity since 2013 and registered as a charity with the Charity Regulatory Authority in 2019.
The purpose of Vasculitis Ireland Awareness is to offer support and information to patients and family members of Vasculitis where needed, increase awareness of the Vasculitis conditions and to improve management of Vasculitis. Julie is also involved in ERN- RITA.
John MILLS

jandsmills@btinternet.com
Vasculitis UK
John Mills is Vice-Chairman & Director of Operations of Vasculitis UK. Mills was previously Chairman of Vasculitis UK (or the Stuart Strange Vasculitis Trust as it was then known) from 2009 to 2019. Vasculitis UK has been a Registered UK Charity since 1992.
The aims of Vasculitis UK are:
To support those suffering from vasculitis diseases and their families by providing information, advice and education.
To work with other organisations and medical professionals to improve the recognition, diagnosis and treatment of vasculitis diseases.
To raise awareness of vasculitis disease among medical professionals and the general population and to enable vasculitis sufferers to contact others with vasculitis.
To support research into the causes and effects of vasculitis and into improvements in the diagnosis of vasculitis and into treatment of people suffering from different types of vasculitis.
Ciaran CLISSMANN

ciaran@pintailservices.com

Grace DAVEY

grace.davey@pintailservices.com
Pintail Ltd.
Ciaran is Managing Director and owner of Pintail Ltd. Pintail, founded in 2001, is an Irish SME which specialises in supporting scientific research through effective administration, high-impact dissemination and informed exploitation planning. Ciaran holds a Masters in Computer Science from University College Dublin, and has been a research strategist and projects expert since 1986. He has personal experience of projects in health, ICT, cultural heritage and security. Within the projects in which he is active, he is the ‘go to’ expert on all questions of EU regulations, budgets, costs, legalities, contracts, guidelines and formalities. As a computer scientist, he also has excellent insight into the interface between health and ICT and plays an active role in the more technology-driven work-packages of several projects.





Grace is a project consultant with Pintail Ltd. Prior to joining Pintail Grace was an EU programme manager in NUI, Galway, Ireland responsible for management of large multi-national EU Research Consortia. Grace has a PhD in Molecular Biology and 20 years experience post PhD in research and project management roles across many EU framework programmes (FP4, FP5, FP6, FP7, and H2020). Grace’s role in FAIRVASC is to support the coordinators and project consortium in all aspects of day to day coordination and management, including progress toward milestones and deliverables, report writing and dissemination of project results.
Dipak KALRA

dipak.kalra@i-hd.eu



Nathan LEA

nathan.lea@i-hd.eu



Maria CHRISTOFIDOU

maria.christofidou@i-hd.eu



Hannelore AERTS

hannelore.aerts@i-hd.eu
The European Institute for Innovation through Health Data (i~HD)

Dipak is President of The European Institute for Innovation through Health Data (i~HD). He plays a leading international role in research and development of Electronic Health Records, including the development of ISO standards on EHR interoperability, personal health records, EHR requirements, security and data protection. Dipak has led multiple Horizon 2020 and IMI projects in these areas, alongside pharma companies, hospitals, patient and professional organisations and ICT companies. His current projects include the generation and acceptance of real world evidence in pregnancy, the governance of patient-centric clinical trials, scaling up the quality, interoperability and the reuse of health data for research, the readiness of hospitals to generate evidence for value based care, and a new initiative to explain the value of research using health data to the public. Dipak is Professor of Health Informatics at University College London, Visiting Professor at the University of Gent, a member of CEN and ISO standardisation bodies and a former GP.



Nathan Lea (PhD) is an independent consultant who is working with i~HD as their data protection officer and on the development of adaptive codes of practice and standard operating procedures to govern and secure the use of health and genetic data for research purposes and digital health innovation. He has focused his work on operational security and design implementation and he has an interest in understanding the legal, ethical and societal impacts and concerns around novel health data uses, particularly in the area of Artificial Intelligence for health management and genomics research. Nathan is the Information Governance Lead for the University College London Hospitals NHS Foundation Trust NIHR Biomedical Research Centre Clinical Research Informatics Unit and a Senior Research Fellow at UCL where his research and teaching focuses on understanding legal, ethical and security requirements for Big Data driven clinical research.  Nathan has worked with the UCL European Institute to examine the implications of No Deal Brexit on EU Data Flows and reviewing transatlantic data flows in the light of Privacy Shield and the Schrems II Case.
He is an Editorial Board Member of the International Journal of Population Data Science.

Maria Christofidou is an Early Stage Researcher based at the European Institute for Innovation Through Health Data (i-HD). She graduated from the University of Kent with a LLB in Law (2012-2015) and followed on to study at the University of Edinburgh where she graduated with a LLM in European Law (2015-2016). She successfully passed the LPC at the University of Law (2016-2017), subsequent to which she worked in an international law firm in London on Intellectual Property law. In 2019 she was a stagiaire at the Legal Service of the European Commission dealing with Competition Law and then joined a consultancy where she worked on EU public affairs relating to healthcare and life sciences. In 2020 she successfully applied for the Marie Skłodowska-Curie HELICAL Grant and is currently undertaking her PhD at the University of Ghent on GDPR and health data.

Hannelore Aerts obtained a master’s degree in Clinical Psychology and an advanced master’s degree in Statistical Data Analysis at Ghent University. Afterwards, she has obtained a PhD at the Department of Data Analysis (Ghent University, Faculty of Psychology and Educational Sciences), studying novel methods for personalized medicine in brain tumor patients. Currently, she is employed at i~HD as Data Quality Programme Manager, where she coordinates all data quality projects from A to Z, including study design and preparation, data quality assessment, and reporting. In addition, she performs research to further optimize the i~HD data quality services and data quality assessment.