Surveillance of US deaths related to myelodysplastic syndromes, and the need for linkages with central cancer registries.

Myelodysplastic syndromes (MDS) are a heterogeneous group of tumors with subgroups that differ in prognosis, including risk of transformation to leukemia and also in survival rate. An analysis was conducted of deaths in US residents with MDS coded on the death certificate, for surveillance of MDS-related death rates. MDS was coded for 18,304 deaths in 2005-2006 (age-standardized rate = 2.98 per 100,000 per year) using multiple causes of death vs 9,995 (age-standardized rate =1.63 per 100,000 per year) using only the underlying cause of death. For deaths with MDS mentioned as other than the underlying cause, the most common underlying causes were cancers (of which 65% were leukemia) and cardiovascular diseases. Thus, surveillance of MDS-related mortality is unusual in comparison to most types of cancer, in that use of multiple causes of death is required, as also previously reported for myeloproliferative neoplasms. Use of multiple causes improves estimation of the burden of MDS-related deaths in the population, which enhances the importance of MDS in planning cancer research and control efforts. Linkages with cancer registries should be conducted to evaluate the accuracy of data on MDS as a cause of death on death records, for use in interpreting surveillance data on MDS-related mortality.