Abstract

Purpose Epidemiology and outcome of myelodysplastic syndromes (MDS) in the United States is not well recognized. MDS became reportable to the Surveillance, Epidemiology, and End Results Program (SEER) in 2001. We report first study of MDS among large population in the Veteran Affair system. Patients and methods There are approximately 127 VA Medical Centers diagnosing and/or treating Cancer patients. The data collected by the medical centers cancer registries is aggregated as the VA Central Cancer Registry (VACCR). We used the VACCR to analyze VA patients with MDS diagnosed between 1995 and 2006. The cases were identified using ICD-03 histology codes for MDS. Results A total of 2242 MDS cases were registered during the period analyzed. The median overall survival (OS) was 2.1 years, but varied by French-American-British category. Median OS for patients with RA, RARS and RAEB was 3.4, 4.9, and 0.7 years, respectively. No differences in OS were observed by race. Conclusion Outcome of MDS in the VA was similar to what is described in literature and reported by the SEER Program. Appropriate coding for WHO subtypes, IPSS and treatment details are needed in all MDS registries to facilitate comparisons across populations.

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