Multiple Myeloma Data in the Cancer Research Network
multiple myeloma, cancer
Background/Aims: Multiple myeloma is a rare plasma cell cancer that disproportionately affects men and blacks/African-Americans. Research supported by initiatives such as the Cancer Research Network (CRN) is needed to advance knowledge about this uncommon but increasingly prevalent disease. The CRN is a consortium funded by the National Cancer Institute to support cancer research among a subset of HCSRN sites. The data collected and maintained by CRN sites facilitate a variety of multiple myeloma research opportunities.
Methods: Data from eight funded and three affiliate CRN sites were included in this analysis. Counts and characteristics of multiple myeloma diagnoses during 2003–2012 were obtained from the CRN Cancer Counter, an informatics tool that provides aggregate data to assist in study planning. Site-specific descriptive analyses included annual counts of incident cases as well as demographic distributions. Updated counts, enrollee retention metrics and cancer treatment information will be obtained from each site’s Virtual Data Warehouse in early 2016 via a centrally developed SAS software program.
Results: During 2003–2012, 5,137 multiple myeloma cases were diagnosed among 11 CRN sites. Annual diagnoses increased steadily from 405 cases in 2003 to 610 in 2012. The majority of diagnoses (61%; n = 3,117) occurred among persons age 65 or older, although that percentage ranged from 37% to 70% across sites. Males accounted for 57% (n = 2,920) of diagnoses with a range of 49–63% across sites. Blacks/African-Americans comprised 13% (n = 686) of total diagnoses, although two sites contributed > 80% of those cases. Among persons with known ethnicity, Hispanics accounted for 7% (n = 289) of diagnoses, with one site contributing nearly 80% of those cases.
Conclusion: The CRN supports the infrastructure to maintain high-quality data (from tumor registries as well as internal health plan systems) on patients diagnosed with cancer at participating sites. Furthermore, the multisite CRN environment allows for the study of rare cancers among a large, demographically diverse patient population. Thus, the CRN provides a setting that is well suited for research in what is potentially one of the largest multiple myeloma cohorts with longitudinal data.
Ziebell RA, Chubak J, Epstein MM. Multiple myeloma data in the Cancer Research Network. J Patient Cent Res Rev. 2016;3:174.