International Childhood Cancer Data Partnership
Joanne AITKEN
Joanne AITKEN
Australia - Cancer Council Queensland; School of Public Health, The University of Queensland
Professor Joanne Aitken is Director of Research at Cancer Council Queensland, Director of the Australian Childhood Cancer Registry, a Ministerial appointee to the Advisory Council of Cancer Australia, and President and Chair of the Board of the International Association of Cancer Registries.
She is a cancer epidemiologist with a special interest in the epidemiology of skin cancer and cancer in children and she is actively involved in national and international cancer surveillance practice and policy. Her work has been cited over 16,000 times in the scientific literature.
November 7 – 2.30 – 3.45pm
Session: Workshop #3 Data Governance & Data exchange – Session 1
Role: Discussant
Monica BERTAGNOLLI
Monica BERTAGNOLLI
USA - National Cancer Institute
Monica Bertagnolli, M.D., began work as the 16th director of the National Cancer Institute (NCI) on October 3, 2022. Throughout her career, Dr. Bertagnolli has been at the forefront of the field of clinical oncology, in particular, advancing current understanding of the gene mutation that promotes gastrointestinal cancer development and the role of inflammation as a driver of cancer growth. As a physician–scientist, she led gastrointestinal science initiatives from 1994 to 2011 within the NCI-funded Cooperative Groups Program (now known as NCI’s National Clinical Trials Network), and from 2011–2022 served as group chair of the Alliance for Clinical Trials in Oncology, a National Clinical Trials Network member organization. In addition, from 2007–2018, she served as the chief of the division of Surgical Oncology for the Dana-Farber Brigham Cancer Center.
Dr. Bertagnolli has championed collaborative initiatives to transform the data infrastructure for clinical research and is the founding chair of the minimal Common Oncology Data Elements (mCODE) executive committee. She also is a past president and chair of the board of directors of the American Society of Clinical Oncology and has served on the board of directors of the American Cancer Society and the Prevent Cancer Foundation. In 2021, she was elected to the National Academy of Medicine, having previously served on the National Academies National Cancer Policy Forum.
November 7 – 9.30 – 10am
Session: Opening – Day 1
Role: Discussant
Manola BETTIO
Manola BETTIO
Italy - European Commission, Joint Research Centre (JRC)
Manola’s education is in Demography and Social Statistics, and in Medical Statistics. She started her professional career in the veterinary epidemiology field. In 2011 she joined the European Commission (EC) at Eurostat, in the environmental and agricultural statistics field, and continued working in the same research area later at the EC Joint Research Centre (JRC).
She finally moved to her interest research domain in Public Health in 2013, where at the JRC she coordinates the Cancer Information group, hosting and managing data from European population-based cancer registries contributing to the European Cancer Information System (ECIS), and supporting the coordination of activities of the European Network of Cancer Registries (ENCR).
November 7 – 11:40 – 12:40pm
Session: Roundtable – Discussing legal challenges for data sharing and initiatives to address them
Role: Discussant
Suzi BIRZ
Suzi BIRZ
USA - University of Chicago, Pediatric Cancer Data Commons, Regulatory and Data Governance Consultant
Suzi Birz leads the legal and regulatory efforts for the University of Chicago’s Data for the Common Good (D4CG).
D4CG is dedicated to building communities, platforms, and ecosystems that maximize the potential of data to drive discovery and improve human health. D4CG’s flagship project, the Pediatric Cancer Data Commons, is structured around disease consortia.
Ms. Birz works with each one to establish the consortium via the execution of a memorandum of understanding, establish an executive committee, and adopt policies guiding the operations of the consortium. She works with data contributors to execute data contributor agreements, and following the approval of a research project, with investigators to execute data use agreements.
In her D4CG role, she leads the activation and operations of the Scientific Advisory Committee, the External Advisory Board, and the AYA Research Council.
Prior to her work with D4CG, she helped several health care organizations meet patient privacy regulations.
November 7 – 11.40 – 12.40am
Session: Roundtable – Discussing legal challenges for data sharing and initiatives to address them
Role: Discussant
November 7 – 2.30 – 3.45pm
Session: Workshop #3 Data Governance & Data Exchange – Session 1
Role: Discussant
Patricia BLANC
Patricia BLANC
France - Imagine for Margo – children without cancer
Patricia Blanc is president, founder and representative of the association Imagine for Margo. The association was founded in 2011 by Patricia Blanc andher husband, parents of Margo, who died of a brain tumourat the age of 14.
For over 10 years, Imagine for Margo has been mobilising, raising awareness and collecting donations to accelerate research into children’s cancer.
Since its creation, thanks to the support of donors, partners and volunteers, Imagine for Margo has raised 20 million euros to fund 42 cutting-edge research programs and 28 innovative treatments, enabling more than 3,000 children to benefit from personalized treatments in France and Europe.
Patricia Blanc is also very active in advocacy efforts towards French and European politicians, regulators and pharmaceutical industry to make laws and research more adapted to better treatments for children with cancer.
November 7 – 10 – 10.30am
Session: Keynote – Patient advocates
Role: Discussant
Laura BOTTA
Laura BOTTA
Italy - Istituto Nazionale dei Tumori Foundation
Dr. Botta got her Master Degree in “Biostatistics and applied statistics” at the University of Milano Bicocca, Italy, in 2012 and she is a third year PhD student in “Biostatistics and Epidemiology” at the University of Burgundy, Dijon, France.
Dr. Botta has 10 years’ experience in research working at the Fondazione IRCCS Istituto Nazionale dei Tumori (Milano-Italy) and has been involved in statistical analysis and data management in several national and international projects for both epidemiological (e.g. EUROCARE, RARECARENet, BENCHISTA) and clinical research.
The cancers she deals with are mainly rare cancers, with a focus on childhood, adolescent and young adult, head and neck and sarcomas.
In recent years, she has developed new statistical methodologies to estimate the excess risk of death from non-oncologic causes in cancer patients and she is involved in the development of the EURACAN registry using the federated approach.
November 8 – 10 – 11.15am
Session: Workshop #4 Innovative Models & Data Management – Session 3
Role: Discussant
Philippe-Jean BOUSQUET
Philippe-Jean BOUSQUET
France - French National Cancer Institute
Philippe Jean Bousquet is a medical Doctor (MD) specialized in Public Health with a special interest in this disciple, that led him to defend a university thesis in epidemiology and biostatistics, and to obtain the authorization to supervise research (Univ. Montpellier I). After spending a year as a researcher at Imperial College in London, he worked as a methodologist at the Montpellier-Nîmes university hospital centers. During this period, he also became a member of the Persons’ Protection Committee (CPP), an expertise that he consequently completed by becoming a member of the Committee for the Evaluation of Research, Studies and Health Assessments (Cerees) for three years.
After he joined the French National Cancer Institute in 2010, he was able to develop the topics relating to the observation of cancers, health information systems and evaluation. This approach conducted him to perfect his knowledge in data science (at Polytechnic Executive School), in order to initiate the Oncology Data Platform and to reinforce partnerships with the main contributors in this field, including the cancer registries. He is one at the initiative of the “Filière intelligence artificielle et cancer”. He also took the responsibility regarding the issue of insurability for people with cancer, by being now a member of the Monitoring and Proposal Committee of the Aeras convention (that permit to people with an aggravated health risk to be able to get insurance and to get loans from banks).
Nov. 7 – 4pm – 5.15pm
Session: Workshop #3 Data Governance & Data Exchange – Session 2
Role: Discussant
Thierry BRETON
Thierry BRETON
France- Institut National du Cancer
Mr Breton’s professional path has been shaped by his keen interest in public-health policies and social affairs.
Before joining INCa he was officer in charge of labour and employment at the General Secretariat of Social Affairs Ministries, and adviser for social affairs at the Health Ministry Office. He teaches political economy in health at the University of Paris Dauphine-PSL.
November 8 – 3.30 – 4pm
Session: Closing Day 2
Role: Discussant
Marie CASTETS
Marie CASTETS
France - INSERM - Share4Kids
Dr Marie Castets is the leader of the team« Cell death and Childhood Cancers » at CRCL. Her aims are to elucidate childhood cancer resistance to cell death by focusing on their developmental origin context, heterogeneity, and dynamics, to move towards more efficient and less toxic innovative therapeutic strategies, with a focus on brain tumors and sarcomas.
She also leads the national pediatric cancer research network @react4Kids, which brings together 400 French and european scientists with two objectives: to boost collaborations between teams and share resources and expertises. She is the PI of the Share-4Kids project, whose goal is to create a shared open-access multi-omic data warehouse for pediatric cancers. Her work has been recognized by the Fondation de France (2012) and the French Academy of Medicine (2012) & Sciences (2013).
November 7 – 4pm – 5-15pm
Session: Workshop #2 Interoperability – Session 2
Role: Discussant
Rosa CASTRO
Rosa CASTRO
BELGIUM - Deutsche Stiftung Weltbevölkerung (DSW)
Rosa Castro is a Senior Advocacy Officer at global health NGO, DSW. She has over 10 years of experience in academia and as policy expert in EU health policy, including at the European Public Health Alliance (EPHA), and the Federation of European Academies of Medicine (FEAM).
She has a law degree, LL.M. and PhD in European Law and Economics and an MA in Bioethics and Science Policy. She was a postdoctoral Fellow at the European University Institute, and at Duke University, USA, and has lectured on intellectual property and international health law.
Nov. 7 – 4pm – 5.15pm
Session: Workshop #3 Data Governance & Data Exchange – Session 2
Role: Discussant