Fort Worth Adolescent and Young Adult Cancer Registry: First Look at Initial Data

Purpose: The adolescent and young adult (AYA) cancer population, defined as patients diagnosed between the age of 15-39, may benefit from focused research in improving health outcomes as compared to younger and older patients. A retrospective data registry was created to collect protected health information (PHI) on AYA cancer cases from four Fort Worth healthcare systems to foster collaboration in research. Methods: Initially testing feasibility, the registry is currently collecting a limited dataset of demographic, diagnostic and treatment information on incident AYA malignant cases between January 2016 through December 2019 via a secure database. A descriptive analysis was performed on the current data. Results: 3 of 4 institutions have submitted data on 514 AYA cancer patients. Even though expected cancer incidence rates increase with age, 195 patients were between 15-19 years of age followed by 128 patients in the 35-39 years of age range. 59% of the total patients were females. The top five cancers with the highest incidence rates were Thyroid cancer, Breast Cancer, GI tract cancer, Germ Cell cancer and Hodgkin's Lymphoma. In terms of insurance, 47% of the total patients were covered by private insurance followed by 18% covered by Medicaid. Conclusions: Initial analysis highlighted the need for further improving the data collection process in terms of handling delays retrieving data and ensuring good data quality. In the future, the registry seeks to increase institutions submitting data with PHI. This repository should be a useful resource for community partners for AYA research.