This past year, NAACCR has provided support to the U.S. National Cancer Institute (NCI) in its work with the French National Cancer Institute (INCa) to co-sponsor the Paris Conference for an International Childhood Cancer Data Partnership, a two-day in-person working meeting to address complex challenges in pediatric cancer research and data sharing. The meeting, held at the Newcap Event Center, Paris, from November 7-8, 2023, took place within the framework of the G7 Cancer Initiative (G7) and had institutional support from the European Commission. The former is a newly formed international collaboration led by INCa, involving six other organizations at the forefront of the fight against cancer, including the NCI. A major priority for G7 is to formulate an international data strategy for pediatric cancer (ref.: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00236-X/fulltext).
With the background that no single country has enough childhood cancer cases to conduct robust analyses on epidemiology, treatment, outcomes, and long-term data on survivorship, the purpose of this working meeting was two-fold:
- Establish an international partnership with countries/registries that are able to provide consistently collected data representing sample sizes for pediatric tumors that will enable statistically meaningful analyses addressing critical research questions.
- Identify approaches for building an infrastructure that can leverage methods to support analyses while maintaining confidentiality and patient privacy under the various national data-sharing regulations. With proper authentication and all the safeguards in place, this infrastructure would be open to researchers across the globe, allowing them to address questions not currently possible.
The longer-term goals are to:
- Include more detailed, high-resolution data (e.g., Toronto Stage data items, genomic information from clinical trials, clinical outcomes such as recurrence).
- Provide relevant information to patients, families, advocates, and clinicians that may not be available based on data from a single country.
The International Childhood Cancer Data Partnership complements other ongoing projects that provide important information on trends in incidence, survival, and mortality for pediatric cancers. Examples of such complementary work include the International Agency for Research on Cancer’s Cancer Risk in Childhood Cancer Survivors (CRICCS) and International Incidence of Childhood Cancer (IICC), and the University College London’s International Benchmarking of Childhood Cancer Survival by Stage (BENCHISTA).
The Paris Conference convened 210 participants from a wide spectrum of disciplines in pediatric oncology, including cancer registry leaders and staff, clinicians, data scientists, and epidemiologists from institutions in 17 countries (Australia, Austria, Belgium, Brazil, Canada, Columbia, France, Germany, Ireland, Italy, Japan, Jordan, Netherlands, Norway, Slovenia, United Kingdom, and United States).
The Conference’s format allowed participants to hear from keynote speakers, patient advocates, cancer survivors, and policy makers, as well as engage in fruitful discussions through four planned workshops. Each workshop consisted of four sessions, with each session facilitated by two experts. In each of the first three sessions, two discussants presented their work related to the topic, along with specific initiatives they had worked on to advance the issue. The fourth session wrapped up what was discussed in each of the three previous sessions. Below is a summary of what each workshop focused on and selected key barriers, potential solutions, and next steps addressed and identified during discussion among facilitators, discussants, and attendees.
Workshop #1 – Harmonization of Clinical and Biological Data
This workshop was facilitated by Eva Steliarova-Foucher (IARC) and Serban Negoita (NCI) and focused on identifying 1) the categories of data items/elements that should be considered for data exchanges as part of an International Childhood Cancer Data Partnership, 2) standards used for data collection, including definitions, formats, and quality measures, and 3) genetic and molecular data with clinical/phenotypic data for childhood tumors.
Workshop #2 – Interoperability
This workshop was facilitated by Johanna Goderre (NCI) and Eric Durbin (Kentucky Cancer Registry) and focused on: (1) identifying high-priority datasets that would be valuable for data sharing, (2) describing characteristics, sources, and availability for each dataset, (3) distinguishing between technical interoperability, scientific interoperability, and semantic interoperability, (4) detailing potential advantages or challenges as they relate to interoperability for each dataset, and (5) identifying tangible interoperability goals and objectives that can be accomplished through international collaboration.
Workshop #3 – Data Governance and Data Exchange
This workshop was facilitated by Michel Coleman (London School of Hygiene and Tropical Medicine) and Chuck Wiggins (New Mexico Tumor Registry) and focused on:
- Identifying the main issues of data ownership, governance and exchange that must be addressed to initiate and sustain the International Childhood Cancer Data Partnership
- Providing a framework for the development of data sharing agreements in support of the International Childhood Cancer Data Partnership
- Identifying the policies, infrastructure and procedures that will be required to ensure a secure environment for the International Childhood Cancer Data Partnership and to govern user access to this data resource.
Workshop #4 – Innovative Models and Data Management
This workshop was facilitated by Jaime Guidry Auvil (NCI) and Gijs Geleijnse (The Netherlands Comprehensive Cancer Organization) and focused on establishing:
- A common understanding of the opportunities and drawbacks of data anonymization to enable collaborative data analyses across geographies
- Pragmatic scenarios for data access across geographies, addressing various legal and technological realities
- A vision on the usage of innovative data models to facilitate the international childhood data initiative.
In order to keep the discussion ongoing, six work-streams have been identified to follow up on the conference:
- Crafting a report on the key elements discussed during the Conference and publishing a scientific article on the conference.
- Identifying critical research questions that necessitate more effective data sharing.
- Developing a map of available data in participating countries / Mapping ongoing initiatives.
- Establishing a mapping of methodologies useful for enhancing data sharing.
- A task force on overcoming legislative barriers.
- A communication task force to share this work with European and international institutions, patient associations, and the G7.
NAACCR will continue to work with the NCI to implement these workstreams. The ultimate goal of these efforts is to identify opportunities and initiate pilot projects to enhance international pediatric data sharing, progressing in incremental steps.
This article was prepared in collaboration with Fernanda Silva Michels, MSc, PhD, ODS-C.
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