Childhood Cancer Data Initiative Annual Symposium (Abstract Registration): Submission #41

Abstract: Background: Approaches to obtaining structured clinical oncology data from the medical record are not standardized. PRISSMM was developed to reliably and reproducibly capture real-world oncology clinical data for adult solid malignancies from the medical record. We adapted the PRISSMM method to pediatric solid tumors(pediPRISSM) and assessed the feasibility of using pediPRISSMM to determine stage at presentation and progression-free survival(PFS) in patients with Ewing sarcoma(EWS). Methods: Patients diagnosed with EWS who had tumor molecular profiling had medical records abstracted using pediPRISSMM at two institutions. Staging was derived from disease site information from imaging performed during staging (4 weeks from diagnosis). PFS from the diagnosis was based on disease status from radiology reports(PFSimaging) and chemotherapy drug regimen start and stop dates(PFSdrugs). Results: 158 patients with a confirmed EWS-associated fusion were included. Median age at diagnosis was 17 years (range of 1-75), 63% were male and 80% had primary bone disease. Currently, complete pediPRISSM data are available for 43 patients. It was possible to derive stage from pediPRISSMM radiology data for 63% of patients. PFSimaging and PFSdrugs were concordant in 74% of patients. Medical record review for patients with a difference of >6 weeks in PFS revealed multi-institutional care as the most common reason for discordance. Conclusions: Although further analysis is ongoing, these data support the universal implementation of accurate staging forms as part of routine clinical documentation. Concordant findings using PFSimaging and PFSdrugs were achieved in the majority of patients, with highest success seen in patients treated at single institutions.