International Childhood Cancer Data Partnership
09:00 am
Welcoming Coffee
09:30 am
Opening - Day 1
- Norbert IFRAH – President, French National Cancer Institute (INCa)
- Monica BERTAGNOLLI – Director, US National Cancer Institute (NCI)
10:00 a.m
Keynotes - Patient Advocates
- Patricia BLANC – President and Founder, Imagine for Margo
- Hanna JORGENSON – Cancer Survivor and Patient Advocate
10:30 am
Keynotes - Setting the Stage: The Importance of Pediatric Oncology Data Sharing
Keynotes about pediatrics cancers, statistics and global key issues around data sharing
- Véronique MINARD-COLIN – French Society for Childhood Cancers, Gustave Roussy Institute
» DOWNLOAD THE PRESENTATION
- Samuel VOLCHENBOUM – Pediatric Cancer Data Commons
» DOWNLOAD THE PRESENTATION
11:10 am
Coffee Break
11:40 am
Roundtable - Discussing legal challenges for data sharing and initiatives to address them
– Legal Challenges & Legislative Hurdles
– Federated data, Federated learning & Queries
- Suzi BIRZ – Pediatric Cancer Data Commons
» DOWNLOAD THE PRESENTATION - Lindsay FRAZIER – Dana Farber Cancer Institute
» DOWNLOAD THE PRESENTATION - Eva STELIAROVA-FOUCHER – International Agency for Research on Cancer
» DOWNLOAD THE PRESENTATION - Manola BETTIO – European Commission, Joint Research Centre
» DOWNLOAD THE PRESENTATION
12:40 pm
Keynote - Introducing the International Childhood Cancer Data Partnership
– What we would like to build
– What we need to think about
– Q&A
- Lynne PENBERTHY – Associate Director for the Surveillance Research Program, US National Cancer Institute
» DOWNLOAD THE PRESENTATION
12:55 pm
Lunch
02:30 pm
Workshop - Session 1
4 thematic Workshop sessions continuation:
Facilitators Workshop #1:
- Serban NEGOITA (US National Cancer Institute)
- Eva STELIAROVA-FOUCHER (International Agency for Research on Cancer)
Discussants – Session 1:
- Gudrun SCHLEIERMACHER (Curie Institute)
- Sumit GUPTA (Hospital for Sick Children)
Subthemes – Session 1:
- What are the core data elements and how they fit into common data models ?
- Need to harmonize the collection of histology, stage and non-stage prognosticators
Facilitators Workshop #2:
- Eric DURBIN (Kentucky Cancer Registry)
- Johanna GODERRE (US National Cancer Institute)
Discussants – Session 1:
- Peter GOODHAND (Global Alliance for Genomics and Health)
- Jan NYGÅRD (Cancer Registry of Norway)
Subthemes – Session 1:
- How can collaborations enhance the value of treatment and outcome data?
- National standards, mapping and conversions for a childhood data fabric
Facilitators Workshop #3:
- Michel COLEMAN (London School of Hygiene & Tropical Medicine)
- Chuck WIGGINS (New Mexico Tumor Registry)
Discussants – Session 1:
- Suzi BIRZ (Pediatric Cancer Data Commons)
- Joanne AITKEN (Cancer Council Queensland)
Subthemes – Session 1:
- Challenge in harmonization and sharing of pediatric AML data
- Combining genetic and molecular data with phenotypic data for childhood tumors
Facilitators Workshop #4:
- Jaime GUIDRY AUVIL (US National Cancer Institute)
- Gijs GELEIJNSE (Netherlands Comprehensive Cancer Organisation)
Discussants – Session 1:
- Steven THOMAS (Statistics Canada)
- Leucio Antonio CUTILLO (European Commission Joint Research Centre)
Subthemes – Session 1 :
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- Will anonymization provide a potential solution to data sharing for all or many countries?
- What are the potential drawbacks of anonymization as a solution?
3:45 pm
Coffee Break
4:15 pm
Workshop - Session 2
4 thematic Workshop sessions continuation:
Facilitators Workshop #1:
- Serban NEGOITA (US National Cancer Institute)
- Eva STELIAROVA-FOUCHER (International Agency for Research on Cancer)
Discussants – Session 2:
- Paul GIBSON (McMaster Children’s Hospital)
- Bastien RANCE (AP-HP, Paris Hospital)
Subthemes – Session 2:
- Are there data standards for these core data elements?
- Which registries adhere to these standards?
- Do conversions/ crosswalks exist?
Facilitators Workshop #2:
- Eric DURBIN (Kentucky Cancer Registry)
- Johanna GODERRE (US National Cancer Institute)
Discussants – Session 2:
- Marie CASTETS (Share4Kids) & Paul RINAUDO (ADLIN Science)
- Jacqueline CLAVEL (French National Registry of Childhood Cancers)
Subthemes – Session 2:
- Are there existing crosswalks for varying formats/models)?
- Are those crosswalks applicable for this proposed project?
Facilitators Workshop #3:
- Michel COLEMAN (London School of Hygiene & Tropical Medicine)
- Chuck WIGGINS (New Mexico Tumor Registry)
Discussants – Session 2:
- Philippe-Jean BOUSQUET (French National Cancer Institute) ) & Chloé JEGO (Inserm – UNCAN.eu)
- Rosa CASTRO (Deutsche Stiftung Weltbevoelkerung)
Subthemes – Session 2 :
- What legal steps/ agreements must be in place to enable data sharing/ access to data?
Facilitators Workshop #4:
- Jaime GUIDRY AUVIL (US National Cancer Institute)
- Gijs GELEIJNSE (Netherlands Comprehensive Cancer Organisation)
Discussants – Session 2:
- Heidi HANSON (Oak Ridge National Laboratory)
- Robert MILLER (Minderoo Center for Federated Cancer Research)
Subthemes – Session 2:
- Are there options to consolidate data across a limited set of countries that could then provide a “grouped node”?
- Are there specific considerations for federated queries that relate to interoperability questions?
5:30 pm
End of first day conference
08:30 am
Welcoming Coffee
09:00 am
Opening - Day 2
- Tomislav Sokol – Member of the European Parliament (EPP, Croatia)
- Niklas SCHOBER – Cancer Survivor and Patient Advocate
- Claire GIRY – Director General for Research & Innovation, France
10:00 am
Workshop - Session 3
4 thematic Workshop sessions continuation :
Facilitators Workshop #1:
- Serban NEGOITA (US National Cancer Institute)
- Eva STELIAROVA-FOUCHER (International Agency for Research on Cancer)
Discussants – Session 3:
- Arnaud PETIT (French Society for Childhood and Adolescent Cancer and Leukemia)
- Frank WESTERMANN (German Cancer Research Center)
Subthemes – Session 3:
- What genomic variables will be important for childhood cancer research?
Facilitators Workshop #2:
- Eric DURBIN (Kentucky Cancer Registry)
- Johanna GODERRE (US National Cancer Institute)
Discussants – Session 3:
- Stephanie HILL (North American Association of Central Cancer Registries)
- Paul SAULTIER (LEA Platform)
Subthemes – Session 3:
- Are there data exchange layouts applicable to this project (or use cases that could be successfully modeled)?
Facilitators Workshop #3:
- Michel COLEMAN (London School of Hygiene & Tropical Medicine)
- Chuck WIGGINS (New Mexico Tumor Registry)
Discussants – Session 3:
- Hugo CROCHET (Centre Léon Bérard)
- Tomohiro MATSUDA (National Cancer Center Hospital Japan)
Subthemes – Session 3:
- What policies and infrastructure need to be in place for users to access the data in a secure environment?
Facilitators Workshop #4:
- Jaime GUIDRY AUVIL (US National Cancer Institute)
- Gijs GELEIJNSE (Netherlands Comprehensive Cancer Organisation)
Discussants – Session 3:
- Tamara MILLER (Emory University)
- Laura BOTTA (Fondazione IRCCS Istituto Nazionale dei Tumori di Milano – BENCHISTA Project)
Subthemes – Session 3:
- Would a hybrid model (a combination of options discussed at subthemes 1 and 2 be a feasible option? What types/categories of data could be released via each of these tiers?
- Are there different types of research questions/analysis that can be answered and cancer statistics that can be calculated using the different mechanisms?
11:15 am
Coffee Break
11:45 am
Workshop Wrap-Up – Session 4 – Key Takeways
Animation by Facilitators
– Key barriers that need to be addressed & Potential solutions
– Specific next steps to move forward
Facilitators Workshop #1:
- Serban NEGOITA (US National Cancer Institute)
- Eva STELIAROVA-FOUCHER (International Agency for Research on Cancer)
Subthemes – Session 4:
Key Takeaways
Facilitators Workshop #2:
- Eric DURBIN (Kentucky Cancer Registry)
- Johanna GODERRE (US National Cancer Institute)
Subthemes – Session 4:
Key Takeaways
Facilitators Workshop #3:
- Michel COLEMAN (London School of Hygiene & Tropical Medicine)
- Chuck WIGGINS (New Mexico Tumor Registry)
Subthemes – Session 4:
Key Takeaways
Facilitators Workshop #4:
- Jaime GUIDRY AUVIL (US National Cancer Institute)
- Gijs GELEIJNSE (Netherlands Comprehensive Cancer Organisation)
Subthemes – Session 4:
Key Takeaways
1:00 pm
Lunch
2:30 pm
Panel Discussion
Conclusions from the Workshop sessions & Next Steps
4:00 pm
Closing of the Conference
Thierry BRETON – Director General, French National Cancer Institute
Lynne PENBERTHY – Associate Director for the Surveillance Research Program, US National Cancer Institute