International Childhood Cancer Data Partnership
Niklas SCHOBER
Niklas SCHOBER
Niklas Schober is a childhood cancer survivor and patient advocate. At the age of 12, he was diagnosed with a Non-Hodgkin Lymphoma.
Now 18 years-old, he looks back at a journey shaped through optimism and confidence. After two years of chemotherapy and the victory against his cancer, he started to take part in projects such as CCI Europe and UNCAN.eu, where he advocated for cancer patients and their families and fought for improvements in cancer therapies, with a view on social and psychological aspects. Because of the special perspectives of someone who has actually felt how it is to have and fight cancer, he truly understands problems and challenges regarding cancer.
November 8 – 9.00 – 9.30
Session: Opening – Day 2
Role: Discussant
Eva STELIAROVA-FOUCHER
Eva STELIAROVA-FOUCHER
France - International Agency for Research on Cancer
Eva Steliarova-Foucher is a scientist at the International Agency for Research on Cancer (IARC) of WHO.
She obtained the degree Doctor of natural sciences (RNDr) at the Comenius University, Bratislava, Slovakia in 1986, the MSc degree at the London School of Hygiene and Tropical Medicine, UK in 1989 and the PhD degree the Slovak Academy of Sciences in Bratislava in 1994.
She worked at the Slovak National Cancer Registry during 1985-1994.
Based at IARC since then, she currently leads the Childhood Cancer Team and several international childhood cancer projects.
She had coordinated international consortia of cancer registries and is a member of the International Society of Paediatric Oncology (SIOP) since 2015.
November 7 – 11:30 – 12:30 am
Session: Roundtable – Discussing legal challenges for data sharing and initiatives to address them
Role: Discussant
- November 7 – 2.30 pm – 5.15 pm
- November 8 – 10 am – 12.30 pm
- November 8 (Wrap-up in panel session) – 2 pm – 3.30 pm
Session: Workshop #1 Harmonization
of Clinical & Biological Data
Role: Facilitator
Steven THOMAS
Thomas STEVENS
Canada - Statistics Canada
Steven Thomas is the section chief in charge of the Centre for Confidentiality and Access and is the Principal Confidentiality Officer at Statistics Canada.
He has a degree in statistics from Memorial University of Newfoundland and has worked at Statistics Canada since 1997.
The confidentiality and access group is responsible for research, development and support for statistical disclosure control strategies for both economic and social statistics.
The disclosure control strategies include methods for the safe release of tabular data as well as public microdata files in the form of anonymized and synthetic datasets.
November 7 – 2.30 – 3.45pm
Session: Workshop #4 Innovative Models and Data management – Session 1
Role: Discussant
Samuel VOLCHENBOUM
Samuel VOLCHENBOUM
USA - University of Chicago
Dr. Volchenboum is an associate professor of pediatrics and the associate chief research informatics officer for the Division of Biological Sciences at the University of Chicago.
He is the Dean of Masters Programs, and he designed and launched the UChicago Master’s in Biomedical Informatics. His clinical specialty is pediatric hematology / oncology, caring for kids with cancer and blood diseases.
His research group includes the University of Chicago’s Data for the Common Good (D4CG), 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 dedicated to liberating and democratizing international data for pediatric malignancies.
He is the director of the Informatics Core for the Clinical and Translational Science Award (CTSA), and he is director of the UChicago Clinical Informatics fellowship program.
November 7 – 10.45 – 11.25 am
Session: Keynote – Setting the Stage about the Importance of Pediatric Oncology Data Sharing
Role: Discussant
Frank WESTERMANN
Frank WESTERMANN
Germany - German Cancer Research Cancer (DFKZ)
Head of the Department of Neuroblastoma Genomics at DKFZ and Hopp Children’s Cancer Centre at NCT Heidelberg KiTZ.
Dr. Westermann has worked on the ITCC (Innovative Therapies For Children With Cancer) International Data Integration Platform to prioritize drug development and access for children with cancer. The aim of this project is to take a decisive step towards the systematic prioritization of new cancer therapies for children in Europe and beyond through better use of and access to existing genomic and clinical data.
He has extensive experience in molecularly characterizing childhood cancers, particularly neuroblastoma, and in developing molecular classification systems that are now used in the clinic.
He is member of the clinical sequencing progra “INdividualized Therapy FOr Relapsed Malignancies in Childhood“ (INFORM). The concept of the INFORM registry is to biologically characterize tumor samples (collected through routine standard of care biopsies at the time of the current tumor manifestation) for all pediatric patients with relapsed or refractory high risk disease of the 12 most common but also selected rare entities for whom no further standard of care therapy is available.
November 8 – 10 – 11.15am
Session: Workshop #1 Harmonization of clinical and biological Data – Session 3
Role: Discussant
Chuck WIGGINS
Chuck WIGGINS
USA - New Mexico Tumor Registry
Charles Wiggins, Ph.D., is Director and Principal Investigator for the New Mexico Tumor Registry, a founding participant in the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program.
He is also Professor in the Division of Epidemiology, Biostatistics and Preventive Medicine, Department of Internal Medicine at the University of New Mexico School of Medicine.
Dr. Wiggins has over forty years of experience in cancer surveillance and epidemiology.
He served as President of the North American Association of Central Cancer Registries from 2015-2017 and is President Elect for the International Association of Cancer Registries.
Dr. Wiggins has a strong commitment to conducting population-based cancer surveillance and research that will benefit the diverse communities of New Mexico and the United States, and strives to focus the New Mexico Tumor Registry’s activities toward reducing disparities and diminishing the burden of cancer.
- November 7 – 2.30pm – 5.30pm
- November 8 – 10am – 1pm
- November 8 (Wrap-up in panel session) – 2.30 – 4pm
Session: Workshop #3 Data Governance and data exchange
Role: Facilitator