International Childhood Cancer Data Partnership
Jacqueline CLAVEL
Jacqueline CLAVEL
France - INSERM
Jacqueline Clavel, MD, PhD is research professor at Inserm and has devoted most of her research to the development of epidemiological research on childhood cancers.
One of her main areas of research aims to improve knowledge of childhood cancer risk factors, and has contributed to document the role of environmental, genetic, perinatal and lifestyle risk factors.
A growing part of her research is devoted to the long-term epidemiological follow-up of childhood cancer survivors.
The development of infrastructures capable of providing standardized and quality-controlled information on a national and comprehensive basis has been crucial to this area of research.
With her team, she created the National registry of childhood cancer and then the Childhood Cancer Observation Platform, which complements the registry with several databases, in particular the national COHOPER cohort of all patients diagnosed since 2000.
The field can now rely on invaluable data from tens of thousands of children.
November 7 – 4pm – 5-15pm
Session: Workshop #2 Interoperability – Session 2
Role: Discussant
Michel COLEMAN
Michel COLEMAN
UK - London School of Hygiene & Tropical Medicine
Since 1995, he has been Professor of Epidemiology and Vital Statistics at the London School of Hygiene & Tropical Medicine. He was Deputy Chief Medical Statistician at the Office for National Statistics from 1995 to 2004 and Head of the Cancer and Public Health Unit at the School from 1998 to 2003.
He has previously worked for the World Health Organisation at the International Agency for Research on Cancer in Lyon (1987-1991), and was Medical Director of the Thames Cancer Registry in London (1991-1995).
His main interests include trends and inequalities in cancer incidence, mortality and survival, and the application of these metrics to public health policy and cancer control.
He holds a post as Honorary Consultant in Oncology at UCL Hospitals NHS Foundation Trust. He is Head of the Cancer Survival Group, and sits on the School’s Information Governance Board.
- November 7 – 2.30pm – 5.15pm
- November 8 – 10am – 12.30pm
- November 8 (Wrap-up in panel session) – 2 – 3.30pm
Session: Workshop #4 Innovative Models & Data Management – Session 3
Role: Facilitator
Hugo CROCHET
Hugo CROCHET
France - Léon Bérard Centre
At Léon Bérard Comprehensive Cancer Center, Hugo Crochet is contributing to several innovative projects regarding health data, artificial intelligence and big data to accelerate cancer research.
Léon Bérard is a major actor in real-world data (RWD) and collaborates with key players in the field such as the Health Data Hub, Owkin, Therapanacea, and more. Recently, Léon Bérard announced a strategic partnership with GLEAMER, Europe’s leading AI company in radiology.
Léon Bérard is a member of the Unicancer federation and actively contributes to Unicancer’s big data projects, including ConSoRe, a big data search engine.
Léon Bérard Centre is part of the French consortium that will receive European funding to prepare for the implementation of the European Health Data Space at national level (#EHDS).
November 8 – 10 – 11.15am
Session: Workshop #3 Data Governance & Data Exchange – Session 3
Role: Discussant
Leucio Antonio CUTILLO
Leucio Antonio CUTILLO
Italy - European Commission, Joint Research Centre (JRC)
Leucio Antonio Cutillo is research scientist working to support knowledge generation on rare diseases. His educational background includes a MS in computer engineering from Politecnico di Torino, a ‘Diplôme d’Ingénieur en Systèmes de Communication’ from EURECOM, and a Master in ‘Image et Géométrie pour le Multimédia et la Modélisation du Vivant’ from Télécom ParisTech.
Passionate about security and privacy, he earned his 2012 Ph.D. from Télécom ParisTech, focusing on Security and Privacy in Online Social Networks. Subsequently, during his PostDoc at Politecnico di Torino’s TORSEC group, he delved into cloud system security. In 2019, he expanded his expertise with a Master in Cybersecurity and Critical Infrastructure Protection from Università degli Studi di Genova.
Following a diverse career spanning entrepreneurship, project management, and teaching, his love for research led him in 2021 to the Joint Research Centre of the European Commission. Here, he devised SPIDER, an innovative system enabling the pseudonymisation, linkage, and secure exchange of privacy-critical data, facilitating the creation of cohorts of unique patients without revealing their identities.
November 7 – 2.30 – 3.45pm
Session: Workshop #4 Innovative Models & Data Management – Session 1
Role: Discussant
Eric DURBIN
Eric DURBIN
USA - Kentucky Cancer Registry University of Kentucky
Eric B. Durbin, DrPH, MS, is an Assistant Professor in the Division of Biomedical Informatics at the University of Kentucky (UK) College of Medicine.
He serves as the Director of the Surveillance, Epidemiology, and End Results (SEER) Kentucky Cancer Registry (KCR). He also serves as Director of the Cancer Research Informatics Shared Resource Facility at the National Cancer Institute (NCI) Designated UK Markey Comprehensive Cancer Center. He has over 33 years of experience in population-based cancer surveillance and informatics support for basic, clinical, population, and translational cancer research. His research interests include biomedical informatics methods in cancer surveillance, precision cancer surveillance, and cancer epidemiology.
Dr. Durbin’s current research is focused on the integration of multi–omics data to support decision-making in precision medicine and cancer prevention and control. His research team develops informatics methods to support population-based cancer research and collaborates in the development of machine learning methods to derive clinical biomarkers from narrative medical documents and pathology digital whole slide images. He also leads epidemiological studies exploring environmental, genetic, molecular, and other factors associated with the high incidence rates of childhood brain and central nervous system tumors in Kentucky and Appalachia.
- November 7 – 2.30pm – 5.15pm
- November 8 – 10am – 12.30pm
- November 8 (Wrap-up in panel session) – 2 – 3.30pm
Session: Workshop #2 Interoperability
Role: Facilitator
Lindsay FRAZIER
Lindsay FRAZIER
USA - Dana-Farber Cancer Institute
Dr. Frazier is Professor of Pediatrics and Institute Physician at Dana-Farber Cancer Institute. She received her MD from Dartmouth and completed residency and fellowship at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. Dr. Frazier also holds a master’s degree from the Harvard Chan School of Public Health.
Dr. Frazier leads the Malignant Germ Cell International Consortium (MaGIC) comprised of the world’s leading experts in the etiology, epidemiology, treatment and survivorship of germ cell tumors.
Dr. Frazier also leads the Center for Adolescent and Young Adult Oncology at the Dana-Farber Cancer Institute.
Dr. Frazier is passionate about mentorship and mentorship training and is currently a Principal Facilitator of mentorship training nationally with the Center for the Improvement of the Mentored Experience in Research (CIMER) based at the University of Wisconsin.
November 7 – 11:40 – 12:40pm
Session: Roundtable – Discussing legal challenges for data sharing and initiatives to address them
Role: Discussant
Gijs GELEIJNSE
Gijs GELEIJNSE
Nederland - Integraal Kankercentrum Nederland
Dr Geleijnse is leading the Data Science team at IKNL and oversees IKNL’s innovation program. He holds a MSc in Computer Science and PhD in Artificial Intelligence, with over 12 years’ experience at Philips Research as industrial scientist and project manager in clinical informatics. He is interested in means how novel technology and data can be used to improve decision making and improve our understanding of health and care.
At IKNL, he works on innovations centered around the Netherlands Cancer Registry. He addresses ways to make the flow from patient record data to insights faster and more effective. In several projects, he explores how Artificial Intelligence (AI) and Privacy-Enhancing Technologies (PETs) can be used to support cancer registration and help to mitigate the current challenges in data sharing. He is involved in several Horizon projects shaping the European Health Data Space and pioneering the establishment of modern, federated registries.
He leads the Blueberry project, with the goal to establish a sustainable, scalable European clinical registry for rare solid cancers in adults (EURACAN ERN). He works with the European Medicine Agency on data harmonization, quality and federated analyses.
Besides the work on the set-up of a modern registry, Dr. Geleijnse is committed to extracting value from cancer registry data for a diverse audience. Innovations such as the Dutch Cancer Atlas, the synthetic Netherlands Cancer Registry and personalized statistics for patients contribute to the registry’s societal impact.
- November 7 – 2.30pm – 5.15pm
- November 8 – 10am – 12.30pm
- November 8 (Wrap-up in panel session) – 2 – 3.30pm
Session: Workshop #4 Innovative Models & Data Management – Session 2
Role: Facilitator
Paul GIBSON
Paul GIBSON
Canada - McMaster Children’s Hospital
Dr. Gibson is a Graduate of Queen’s University’s Medical School. He completed Pediatric Residency training at B.C. Children’s Hospital prior to subspecialty training at The Hospital for Sick Children. He joined the Section of Pediatric Hematology and Oncology at Children’s Hospital, London Health Sciences Centre full time in 2010 before moving to join the Division of Pediatric Hematology and Oncology at McMaster Children’s in 2019.
Dr. Gibson has been Associate Medical Director of the Pediatric Oncology Group of Ontario (POGO) since 2015. His role with POGO includes medical support of the 8 POGO Satellite programs across the province and leading POGO’s efforts in drug and technology access.
Dr. Gibson has served as the chair of the Management Committee Cancer in Young People in Canada (CYP-C), Canada’s national pediatric cancer registry since 2021. He is Associate Chief Medical Information Officer of Hamilton Health Sciences helping lead the corporate migration to the Epic Electronic Health Record.
November 7 – 4 – 5.15 pm
Session: Workshop #1 Harmonization of clinical and biological Data – Session 2
Role: Discussant
Claire GIRY
Claire GIRY
France - Ministry of Higher Education, Research & Innovation
Claire Giry is a former student from the Ecole Normale Supérieure (ENS) de Lyon, and holds a PhD in Molecular and Cellular Biology from Université Claude Bernard Lyon I. Throughout her career, she has been strongly involved in research and innovation management and policies.
In particular, she was responsible for developing national, European and international partnerships at the ‘Commissariat à l’Energie Atomique et aux Energies Alternatives’ (C.E.A.) and the ‘Institut National de la Santé et de la Recherche Médical’ (Inserm), the French National Institute for Health & Medical Research.
Claire Giry was also technical advisor to the Prime Minister for Higher Education & Research between 2007 and 2009, then head of the joint department of the Directorate General for Higher Education & Professional Integration (D.G.E.S.I.P.) and the Directorate General for Research & Innovation (D.G.R.I.) in the Higher education and research french Ministry.
She then led the “Centers of Excellence” program at the French General Investment Commission, before joining Inserm in 2012 where she notably held the role of Vice CEO.
Claire Giry was named Director General for Research & Innovation at the Ministry of Higher Education, Research & Innovation in 2021.
November 8 – 9.30 – 10am
Session: Opening Day 2
Role: Discussant
Johanna GODERRE
Johanna GODERRE
USA - National Cancer Institute
Ms. Goderre is the Technical Lead for the National Childhood Cancer Registry at the US NCI and manages real-world data acquisition and interoperability projects to enhance cancer surveillance data and data sharing initiatives. Ms. Goderre has over 18 years of experience in health research and evaluation, public health informatics, health systems delivery, and the information systems necessary to support research in those fields.
In 2014, she transitioned from epidemiologic research programs to information technology solutions and standards for US commercial and federal health services. Since then, she has successfully led requirements analysis to ensure healthcare systems capture and report high-quality data and led evaluations of information exchange efforts for state and federal governments.
She has authored publications about research and data programs and technical data standards. She holds a Master of Public Health and a Public Health Geographic Information Systems Certificate from the University of Illinois at Chicago (UIC).
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November 7 – 2.30pm – 5.15pm
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November 8 – 10am – 12.30pm
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November 8 (Wrap-up in panel session) – 2 – 3.30pm
Session: Workshop #2 Interoperability
Role: Facilitator