Working Group 1
WEBINAR 1 – September 23rd, 2024
Working group 1 focuses on international data sharing and pediatric cancers. Its co-leads are Lynne Penberthy, (National Institutes of Health - National Cancer Institute, USA), and Claire Morgand (French National Cancer Institute, France). The group’s goals are to evaluate and generate resources that describe potential data available for international sharing across various data types and to create a resource detailing successful methods and projects for sharing pediatric cancer data internationally.
The group organized a Conference for an International Childhood Cancer Data Partnership in Paris on November 7 and 8, 2023. It addressed complex challenges linked to research on pediatric cancer and data sharing. The French National Cancer Institute and the US National Cancer Institute (NCI) have jointly published the report of this conference.
As an outcome of this conference, Working group 1 implemented several workstreams and is now working with international partners to build and develop different pilot projects to understand what type of data sharing and research is feasible globally. The underlying premise is that successful data sharing methods for pediatric cancer can also support data sharing for other rare diseases with similar research challenges.
September 23rd, 2024
5pm to 6pm (Paris time)
• Mapping Available Data in Participating Countries and Ongoing Initiatives (Work stream 3)
• Pilot Project Updates:
– Canada-US-France data sharing Pilot
– International Piloting of ExtractEHR
Lynne Penberthy (National Cancer Institute – NCI)
Dr. Lynne Penberthy is the Associate Director for the Surveillance Research Program (SRP). She holds an MD from the University of Michigan and an MPH in epidemiology from Johns Hopkins.
Dr. Penberthy has extensive experience in cancer surveillance, clinical trials assessment, and developing informatics tools.
Serban Negoita (National Cancer Institute – NCI)
Serban Negoita is the Chief of the Data Quality, Analysis, and Interpretation Branch (DQAIB) at the Surveillance Research Program. With an MD from the University of Medicine and Pharmacy in Bucharest and a DrPH from the State University of New York, he has over 25 years of experience in cancer surveillance and public health research.
» US / France / Canada
Austin Fitts (National Cancer Institute – NCI)
Austin Fitts, PharmD, has joined the Surveillance Research Program (SRP) in the Surveillance Informatics Branch (SIB) as a Cancer Research Training Award postdoctoral fellow. He supports Dr. Elizabeth Hsu on projects related to the National Childhood Cancer Registry (NCCR). His primary interests are pediatric cancer, machine learning, and pharmacogenomics.
Adrian Gee (StatCan)
Adrian Gee has been with Statistics Canada for seven years and joined the Cancer team as an Analyst in Spring 2023, prior to which, he worked on projects related to MAID and Excess Mortality in the Vital Statistics team. Adrian completed his MSc(Med) at Memorial University of Newfoundland with a focus on spatial and temporal epidemiology. His interests include data linkages & dissemination, public health discourse, and health inequities.
» ExtractEHR
Tamara Miller (Emory University School of Medicine)
Tamara Miller, MD, MSCE is an associate professor in the Department of Pediatrics at Emory University School of Medicine. Dr. Miller treats pediatric hematology/oncology patients at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. She received her MD from the Yale University School of Medicine and completed a Masters of Science in Clinical Epidemiology at the University of Pennsylvania. Her research is focused on leveraging electronic health record data to describe cancer treatments, toxicities, and outcomes and performing clinical epidemiology research in supportive care that will improve clinical care of children with cancer.
Lynne Penberthy (National Cancer Institute – NCI)