International Childhood Cancer Data Partnership
Peter GOODHAND
Peter GOODHAND
Canada - Global Alliance for Genomics and Health
Peter Goodhand is a leader in the global health sector, holding senior executive and board member positions in the genomics research community.
He played a key role in the creation of the Global Alliance for Genomics and Health (GA4GH) to accelerate progress in genomic research and health in June 2013 and is currently the President and CEO of the organization. He also served as President of the Ontario Institute for Cancer Research from 2016-18.
Prior to his role with GA4GH, he was the President and CEO of the Canadian Cancer Society, and before joining the charitable sector, he had a 20-year career in the global medical technology industry.
In addition to his role at GA4GH, he is Co-Chair of the IHCC and sits on several international boards in areas of genomics, cancer, and rare diseases. Peter also had a 12-year experience as a patient advocate, caregiver, and navigator throughout his family’s battle with a rare cancer.
November 7 – 2.30 – 3.45 pm
Session: Workshop #2 Interoperability – Session 1
Role: Facilitator
Jaime GUIDRY AUVIL
Jaime GUIDRY AUVIL
USA - National Cancer Institute
Dr. Jaime M. Guidry Auvil, the Director of the Office of Data Sharing (ODS) within the National Cancer Institute (NCI), oversees the NCI strategy and approach to development, interpretation and implementation of data sharing and public access policies in cancer research. Dr. Guidry Auvil has led critical, high profile data sharing initiatives for NCI and NIH, including large-scale pediatric cancer research through Therapeutically Applicable Research to Generate Effective Treatments (TARGET) initiative, Gabriella Miller Kids First Pediatric Research Program, and current flagship program for NCI, the Childhood Cancer Data Initiative (CCDI).
Dr. Guidry Auvil is well-published and provides expertise in optimizing data for cancer research as part of several advisory committees within and across United States federal agencies and international organizations. Dr. Guidry Auvil has held scientific research and regulatory positions in industry, academia and government focusing on healthcare biobanking for infectious disease and cancer, as well as research in mental health, addiction and post-traumatic stress. Dr. Guidry Auvil received her doctorate in Tumor Biology from Georgetown University, where she further holds a patent for a small molecule inhibitor targeting adhesion proteins in bone cancer metastases.
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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 #4 Innovative Models & Data Management
Role: Facilitator
Sumit GUPTA
Sumit GUPTA
Canada - SickKids
Dr. Gupta is a pediatric oncologist at the Hospital for Sick Children in Toronto, Canada and the head of the Section of Leukemia and Lymphoma.£
He obtained his MD and PhD from the University of Toronto, where he is an Associate Professor.
Dr. Gupta helped co-lead the creation of the Toronto Stage Guidelines and co-leads the Metadata Working Group of the National Childhood Cancer Registry
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November 7 – 2.30 – 3.45 pm
Session: Workshop #1 Harmonization of Clinical & Biological Data – Session 1
Role: Discussant
Heidi HANSON
Heidi HANSON
USA - Oak Ridge National Laboratory
Dr. Hanson is a Group Lead in the Advanced Computing for Health Sciences at Oak Ridge National Laboratory (ORNL) and leads the Modeling Outcomes using Surveillance data and Scaleable Artificial Intelligence for Cancer (MOSSAIC) project. MOSSAIC is a partnership with the National Cancer Institute and a sub-project of the Joint Design of Advanced Computing Solutions for Cancer (JDACS4C).
The APIs developed by her team have been deployed in 16 Surveillance, Epidemiology, and End-Results (SEER) population registry and 1 non-SEER registry to auto-code pathology reports. The tools and tasks lay the groundwork for population scale real-time cancer surveillance, clinical trials matching at the patient level, and prediction of cancer outcomes.
November 7 – 4 – 5.15pm
Session: Workshop #4 Innovative Models & Data Management – Session 2
Role: Discussant
Stéphanie HILL
Stéphanie HILL
USA - North American Association of Central Cancer Registries (NAACCR)
Stephanie Hill is the Associate Director of the North American Association of Central Cancer Registries (NAACCR) where she serves as the main project lead for the National Childhood Cancer Registry, a collaboration between NAACCR and the National Cancer Institute.
Ms. Hill also oversees the inter-agency change management process for the NAACCR Data Standards that are used by all cancer registries throughout North America.
Ms. Hill has a bachelor’s degree from Rutgers University and a Master of Public Health from Johns Hopkins University.
She is a Certified Tumor Registrar (CTR) with over 20 years of experience managing both hospital-based and central cancer registries.
She is the former Program Manager of Operations for the New Jersey State Cancer Registry.
November 8 – 10 – 11.15am
Session: Workshop #2 Interoperability – Session 3
Role: Discussant
Norbert IFRAH
Norbert IFRAH
France - Institut National du Cancer
Professor Ifrah has completed most of his career as a clinical hematologist and academic in Angers University Hospital, where he was Head of the Blood Diseases Department and in turn Vice-President in charge of research then President of the Medical Commission for two terms (2007-2015). In 2014, he created a Research and Care Federation dedicated to leukemia (GOAL).
Norbert Ifrah has held numerous positions in Medical societies and Boards of Directors: President of the 47th section of the National Council of Universities, of the National research Coordination Committee, of the Federation of France Hospitals Cancer pole, of the College of French Hematologists. Member of the Board of Directors of the French Society of Bone Marrow Transplantation and Cellular Therapy, of the French Blood Establishment, then of the French National Cancer Institute.
A member of an Inserm and CNRS research unit, he led a national research network on adult acute leukemia for fifteen years. He is a signatory of more than 250 international publications, mainly in the field of hematological malignancies.
November 7 – 9.45 – 10.15am
Session: Opening day 1
Role: Discussant
Chloé JEGO
Chloé JEGO
France - Coordination and Support Action 4.UNCAN.eu
Chloé Jégo is a Doctor in molecular biology. She graduated her PhD in October 2019, at Gustave Roussy, in Inserm U1170 (now U1287), under the supervision of Eric Solary. She dedicated those 4 years of research on the characterization of medullar Mensenchymal Stem Cells (MSCs) from Chronic Myelomonocityc Leukemia (CMML) patients.
Following her academic achievements, Chloé travelled and worked around Australia for 2 years, where she gained a profound appreciation for the power of global collaboration and knowledge exchange. This experience sparked her interest in promoting open science practices and strengthening international collaborations in her field..
She is now part of the project management team as a scientific project manager and coordinates 4.UNCAN.eu CSA with Eric Solary. The culmination of the CSA’s efforts is set to deliver a comprehensive blueprint to the European Commission on November 30th. This blueprint will provide invaluable recommendations on the establishment of a European Federated Cancer Research Data Hub, marking a significant step toward enhancing data sharing and research collaboration in the field of cancer, notably in pediatric cancer.
Nov. 7 – 4pm – 5.15pm
Session: Workshop #3 Data Governance & Data exchange – Session 2
Role: Discussant
Hanna JORGENSON
Hanna JORGENSON
USA
Hanna Jorgenson is a childhood cancer survivor and patient advocate. At the age of 16, she was diagnosed with Osteosarcoma and later with Li-Fraumeni syndrome, a cancer predisposition syndrome.
Now 30 years old, her cancer journey has fueled her passion for sharing her story and advocating for cancer patients and their families. Her unique and firsthand understanding of the challenges, uncertainties, and complexities that cancer patients and their families face has driven her passion for data sharing and collaboration to help facilitate research and improve outcomes for all those affected by cancer.
November 7 – 10.15 – 10.45am
Session: Keynote – Patient advocates
Role: Discussant
Tomohiro MATSUDA
Tomohiro MATSUDA
Japan - National Cancer Center
From the early design phase of the Act on Promotion of Cancer Registry which took effect in 2016, Dr. Matsuda has played a central role and contributed to the establishment of the cancer registry system in Japan.
Building on the strong network and trusting relationship he has built in the field of cancer epidemiology and statistics in Europe and Asia as the PI of the IARC Collaborating Center of GICR and the head of the Asian Partnerships Section of ATLAS project, he is striving to advance cancer research, collaborating across nations and disciplines.
November 8 – 10am – 11.15am
Session: Workshop #3 Data Governance & Data exchange – Session 3
Role: Discussant
Robert MILLER
Robert MILLER
USA - Minderoo Foundation
Robert Miller is the Principal of Unlocking Patient Data within the Minderoo Foundation’s Cancer Mission, which aims to leverage data and technology to impact cancer research.
His professional training is in computer science and health informatics and has evolved into open health data standard collaborations. He joined the OHDSI community in 2016 and shortly after began co-leading the Oncology and GIS working groups.
Before joining Minderoo he was with Tufts Clinical and Translational Science Institute (CTSI, US) for 6 years where he helped establish and translate a range of different, disparate data sources into interoperable standards to support research and clinical delivery. He has also served as an OHDSI SME for national collaboration efforts including the National COVID Cohort Collaborative (N3C) and National Center for Advancing Translational Sciences (NCATS).
His current foci include maturing open oncology data standards, building an international community, and systemically accelerating oncology research through philanthropic funding
November 7 – 4.00 – 5.15pm
Session: Workshop #4 Innovative Models & Data Management – Session 2
Role: Discussant