Baseline characteristics, disease-management and outcome of 1000 lower-risk myelodysplastic syndrome (MDS) patients within the European LeukaemiaNet MDS (EUMDS) Registry are described in conjunction with the validation of the revised International Prognostic Scoring System (IPSS-R). The EUMDS registry confirmed established prognostic factors, such as age, gender and World Health Organization 2001 classification. Low quality of life (EQ-5D visual analogue scale score) was significantly associated with reduced survival. A high co-morbidity index predicted poor outcome in univariate analyses. The IPSS-R identified a large group of 247 patients with Low (43%) and Very low (23%) risk score within the IPSS intermediate-1 patients. The IPSS-R also identified 32 High or Very high risk patients within the IPSS intermediate-1 patients. IPSS-R was superior to the IPSS for predicting both disease progression and survival. Seventy percent of patients received MDS-specific treatment or supportive care, including red blood cell transfusions (51%), haematopoietic growth factors (58%) and iron chelation therapy (8%), within 2 years of diagnosis; while 30% of the patients only required active monitoring. The IPSS-R proved its utility as a more refined risk stratification tool for the identification of patients with a very good or poor prognosis and in this lower-risk MDS population.

Center of Hematology and Bone Marrow Transplantation Fundeni Clinical Institute Bucharest Romania

Department of Clinical Haematology Institute of Haematology and Blood Transfusion Praha Czech Republic

Department of Haematology Aarhus University Hospital Aarhus Denmark

Department of Haematology and Oncology Georg August University of Göttingen Göttingen Germany

Department of Haematology Hospital Universitario La Fe Valencia Spain

Department Of Haematology Oncology and Clinical Immunology Universitätsklinik Düsseldorf Düsseldorf Germany

Department of Haematology Oncology and Internal Medicine Warszawa Medical University Warszawa Poland

Department of Haematology Oncology Fondazione Istituto di Ricovero e Cura a Carattere Scientifico Policlinico San Matteo University of Pavia Pavia Italy

Department of Haematology Radboud University Medical Centre Nijmegen The Netherlands

Department of Internal Medicine 5 Innsbruck Medical University Innsbruck Austria

Department of Medicine Division of Haematology Karolinska Institutet Stockholm Sweden

Department of Medicine Divison of Haematology University of Patras Medical School Patras Greece

Department of Tumor Immunology Nijmegen Institute for Molecular Life Sciences Radboud university medical center Nijmegen The Netherlands

Epidemiology and Cancer Statistics Group University of York York UK

Service d'Hématologie Centre Hospitalier d'Avignon Avignon France

Service d'Hématologie Centre Hospitalier de Perpignan Perpignan France

Service d'Hématologie Centre Hospitalier Universitaire de Purpan Toulouse France

Service d'Hématologie Centre Hospitalier Universtaire Brabois Vandoeuvre Nancy France

Service d'Hématologie Hôpital Saint Louis Assistance Publique des Hôpitaux de Paris and Université Paris 7 Paris France

Servicio d'Hematología Servicio de Salud del Principado de Asturias Oviedo Spain

Serviço d'Hematologia Instituto Português de Oncologia de Lisboa Lisbon Portugal

St James's Institute of Oncology Leeds Teaching Hospitals Leeds UK

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