Background: The Pediatric Cancer Data Commons (PCDC; University of Chicago, established in 2015) has provided a robust technical infrastructure to enable harmonization and utilization of big data to answer meaningful research questions for rare diseases. Access to data is challenging and the PCDC is moving the field forward through rapid access to big data without loss of governance for each individual contributor. The HodgkiN lymphOma DatA coLlaboration (NODAL) is the next step in a longstanding collaboration between pediatric Hodgkin lymphoma (HL) consortia to help advance the field.
Methods: Our NODAL subgroup of the PCDC began in 2018 and built on the existing international working group SEARCH for CAYAHL (Staging Evaluation and Response Criteria Harmonization for Childhood, Adolescent and Young Adult HL). The initial collaboration includes an agreement for submission of clinical trial data from COG and St. Jude-Stanford-Dana-Farber clinical trials for classic and lymphocyte predominant HL. During 2019 to 2020 NODAL members worked to harmonize case report forms from clinical trials and develop a comprehensive data dictionary. Foundational steps were made to establish an executive committee, governance structure with policies and procedures, sign a memorandum of understanding to establish the consortium, and data contributor agreements. The NODAL leadership identified research questions for which exploration would be possible with a larger data set than is currently available at any one research group. We used that information to identify working groups that would be ready to start once the data are harmonized. Data are currently being entered into NODAL and next steps will involve utilization of data of nodular lymphocyte predominant Hodgkin lymphoma patients to enable research of this rare subtype of HL previously treated on many classical HL trials.
Conclusion: NODAL is a rich resource and will provide access to large datasets from pediatric HL trials that will facilitate cross-trial comparisons and answer unmet clinical research questions in an expeditious manner. We look forward to inclusion of additional international cooperative groups and sharing this rich resource with the global community for years to come.