MDS Register der niedergelassenen Ärzte

A registry of outpatient clinics has been established in order to describe diagnostic procedures, treatment and course of disease of patients with Myelodysplastic syndromes treated in community outpatient setting (hospital and private practice). From the beginning the registry and the data collection was designed compatibly to the Düsseldorf registry which collects data from MDS patients primarily treated in academic institutions.

Since July 2009 784 newly diagnosed patients from 63 institutions were included in the registry. In April 2012 755 were evaluable with a median follow up of 18.1 month.

The follow up of the patients is performed every three month up to five years. Beside the patient characteristics of the diagnostic procedure (e.g. the number of bone marrow punctures, histology, cytology, chromosomal analyses) and the IPSS score and WHO type will be presented. Further analysis of these pts, including the diagnostic procedures (e.g. histology, cytology, chromosomal analyses) and the different treatments (e.g. watch-and-wait only, iron chelation, epigenetic treatment, cytoreductive treatment, allogenic stem cell transplantation) will be presented.