The European MDS Registry
The European MDS Registry (EUMDS) was initiated in 2008 by a large group of European haematologists collaborating in LeukemiaNet. The Registry collects information from patients with myelodysplastic syndromes (MDS) who are participating in this Registry in 19 countries. The Registry contains information on treatment and disease of more than 3100 MDS patients and continues to include new patients.
What do we register?
In EUMDS we register various types of information of patients who consent to participate. For example, we register what the specific MDS diagnosis is and how this was diagnosed. What type of treatment or medications are administered, and the effects of these treatments. Also lab results are collected which are used by the physician to monitor the disease. Aside from the clinical information, also burden of disease and how you feel (Quality of Life) are registered. In addition, we also collect some blood (and / or bone marrow) if consent is given.
Goals
The main goal of the Registry is to collect and describe information on MDS. This information is used to improve our knowledge of the course of MDS or related diseases, and to gain insight into treatment and outcomes of treatment.
The ultimate goal is to improve diagnosis and treatment of patients with MDS or related diseases in the future.
Scientific studies
The information collected in the EUMDS registry forms the basis for scientific studies. In these studies we seek the answers to scientific questions on the disease MDS and the treatments available. By answering these questions we aim to contribute to the improvement of diagnosis and treatment of MDS.
Results from EUMDS scientific studies will be published in scientific journals (see: 'Publications'). Results will also be presented on large haematological congresses. In addition, summaries of our findings of several studies that already have been performed by the Registry can be found under 'Publications - Lay summaries'. For example, the effect of transfusions on patients quality of life, and ways to improve diagnosis and prognosis for new patients, have been published already. New studies are still ongoing to further contribute to reaching our goals.
Broader information on MDS can be found at our associated European competence network, 'MDS-Europe' website: https://mds-europe.org/.
Are you interested and want to participate?
Patients from all MDS subgroups can participate in the registry, given you have recently been diagnosed with MDS and your hospital participates in the registry. For an overview of participating countries, please, click on the map below. If you would like to find out if your hospital participates, you can download a list of participating hospitals.