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Flavia Mayer
Laura Faglioni
Nera Agabiti
Susanna Fenu
Francesco Buccisano
Roberto Latagliata
Roberto Ricci
Maria Antonietta Aloe Spiriti
Caterina Tatarelli
Massimo Breccia
Giuseppe Cimino
Luana Fianchi
Svitlana Gumenyuk
Stefano Mancini
Luca Maurillo
Carolina Nobile
Pasquale Niscola
Anna Lina Piccioni
Agostino Tafuri
Giulio Trapè
Alessandro Andriani
Paolo De Fabritis
Maria Teresa Voso
Marina Davoli
Gina Zini


myelodysplastic syndromes, epidemiology, medical miscoding


Results on myelodysplastic syndromes (MDS) from population-based studies are rare and these data are infrequently collected by cancer registries because diagnostic difficulties and under-reported data.

Our is the first regional Lazio study about medical coding, diagnosis, classification and mortality of MDS patients. This study is aimed at evaluating MDS medical miscoding and conducting a mortality follow-up in a cohort of 644 MDS patients enrolled in the Gruppo Romano-Laziale Mielodisplasie (GROM-L) registry from 2002 to 2010.

We linked the MDS cohort with 2 regional health information systems: the Hospital Information System (HIS) and the regional Mortality Information System (MIS).

About the first objective 92% of the patients had at most 12 hospitalization, but 28.5% of them had no hospitalization with the 238.7 ICD-9-CM. About the second objective we observed 45.5% of death during the follow-up, Myelodysplastic Syndrome was the second cause of death, other frequent causes of death were myeloid leukemia and aplastic anemia.

This study highlights for the first time in Lazio that a disease like MDS, involving many resources for care assistance, tends to be under-documented in the HIS archive. This may be due to the evolution of the disease over the time, the inappropriate use of existing ICD-9-CM and the limitations of current ICD-9-CM classification. Moreover, the most frequent causes of death other than MDS might suggest a miscoding of MDS in the death causes too.

In conclusion our registry could be a useful investigational tool to make a continued surveillance on medical miscoding and collect epidemiological data.


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