EWOG-MDS Registry

• To prospectively and in selected situations retrospectively register all patients with newly diagnosed MDS, RCC, MDS/MPN or genetic predisposition for these disorders in all participating countries
• To study the epidemiology of MDS, RCC, MDS/MPN or genetic predisposition in childhood and adolescence
• To document the initial diagnostic work-up in reference laboratories
• To document clinical characteristics, treatment and outcome data (i.e. disease status, non-hematological phenotype, treatment decisions, treatment, health status, quality of live, survival)
• To assess biological disease features and correlate with clinical outcome data (prognostic and predictive markers)

No therapy recomendations are given as part of the registry. Data documented in the registry are collected during the routine clinical care of patients and usually reflect the standard of care for diagnosis and treatment:

• Demographic data
• Clinical symptoms
• Diagnostic features incl. morphological, histological, cytogenetic and molecular genetic studies
• Non-hematological phenotype
• Treatment decisions and applied therapy
• Health status, quality of life and outcome

• Confirmed clinical diagnosis of MDS, RCC, MDS/MPN, germline predisposition for these disorders
• Age under 21 years for patients with MDS, RCC, MDS/MPN; no age restriction for individuals with germline predisposition for MDS, RCC, MDS/MPN

• Severe aplastic anemia (SAA) registered in EWOG-SAA
• RCC in the classical IBMFSs Fanconi anemia, dyskeratosis congenita, severe congenital neutropenia, Shwachman-Diamond syndrome, Diamond-Blackfan anemia, and Pearson syndrome
• Transient myeloproliferative disorder in Down syndrome, myeloid neoplasms associated with Down syndrome
• Classical myeloproliferative neoplasm like chronic myeloid leukemia, polycythemia vera, essential thrombocythemia, primary myelofibrosis, chronic eosinophilic leukemia