“Making the Case for an International Childhood Cancer Data Partnership” paper published!

Following the 2023 Paris Conference for an International Childhood Cancer Data Partnership, a collaboration of the U.S. National Cancer Institute (NCI), the French National Cancer Institute (INCa), and NAACCR, I am pleased to share an exciting new development.

A scientific paper titled, Making the Case for an International Childhood Cancer Data Partnership, authored by Gonçalo Forjaz (Westat), Betsy Kohler (NAACCR), and Fernanda Michels (NAACCR), along with speakers from the Paris conference and participants from the G7 Cancer Initiative Working Group on data sharing, has been published in the Journal of the National Cancer Institute (JNCI). The paper highlights key insights and discussions from the conference and emphasizes the importance of collaborative efforts in this field.

Pediatric cancers, as a group, represent a host of heterogeneous rare diseases including ultra rare cancers with only a few cases diagnosed in each country annually. This heterogeneity and sample size limitation leads to a scarcity of data for each type of tumor pathology. This scarcity, in turn, considerably constrains the capacity of research efforts to elucidate the mechanisms underpinning these cancers and develop effective treatments. The paper’s authors conclude that “…only through a concerted effort to share data internationally will we be able to answer research questions that could not otherwise be answered.”

The International Childhood Cancer Data Partnership is the first step in developing a process to better support pediatric cancer research internationally through combining data from multiple countries.

For more information about the Paris Conference products, check the following Narrative articles:

• • NAACCR, NCI Work Toward International Partnerships for Childhood Cancer
  • Now Available! Report from Paris Conference for International Childhood Cancer Partnership