News for MDS patients from the European Registry

Research FOR Patients
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What is the European Myelodysplastic Syndromes Registry (EUMDS) project?

The best way to study a typical group of MDS patients is to set up a registry. A registry involves obtaining consent from patients and collect information about their MDS and the treatments they receive at their usual clinic or Day Case Unit visits.

The European MDS Registry (EUMDS), was initiated in 2008 by a large group of European haematologists. It contains information on treatment and disease of more than 2500 MDS patients from 17 countries and it continues to include new patients.

Many of you will be familiar with the EUMDS project and some of you are registered and actively sharing your MDS data, helping researchers to improve their understanding of the disease. This helps to shape better clinical trials, and ultimately may lead to better treatments for MDS.

Which scientific studies have been performed so far by the Registry?

The information collected in the EUMDS registry forms the basis for scientific studies. In these studies MDS experts seek to answer scientific questions on MDS and the treatments available. By answering these questions scientists aim to improve the diagnosis and treatment of MDS.

The results from EUMDS scientific studies are published in scientific journals and presented on large haematological congresses.

In addition, the EUMDS publishes summaries of these scientific studies for patients and the general public, in a patient friendly format. These are published on the "Lay English Summaries": https://eumds.org/publications/summaries

See, for example, two topics which have been published under "Lay English Summaries":

The effect of transfusions on patients quality of life

Impact of red blood cell transfusion dose density on progression-free survival in lower-risk myelodysplastic syndromes patients.

Red blood cell transfusions (RBCT) are an important part of the general medical care for MDS patients. However, the overall life expectancy of patients treated with RBCT is often decreased compared to untransfused MDS patients. It is unclear whether this lower life expectancy is due to the nature of the disease (more severe illness and therefore greater need for transfusions) or whether it is due to unwanted side effects of the RBCT itself. We observed that even patients transfused with small quantities of blood transfusions have a negatively affected life expectancy. We are unsure what causes this negative association, and hypothesize that it could be related to the release of toxic iron radicals after transfusion. Future studies are needed to confirm these observations and in addition, it is necessary to perform dedicated intervention studies with the aim to overcome this negative effect.

Ways to improve diagnosis and prognosis for new patients

Validation of the revised international prognostic scoring system (IPSS-R) in patients with lower-risk myelodysplastic syndromes: a report from the prospective European LeukaemiaNet MDS (EUMDS) registry

The Registry has been opened for a while, and in this timeframe the scientific community has upgraded the criteria which were used to calculate the prognosis of patients with MDS. These new criteria (IPSS-R) were validated on the first 1000 EUMDS patients who were characterized using the ‘’old’’ (IPSS) criteria. This study shows that using the new criteria, our risk assessment improved for the various MDS patient groups. Currently, both the old and the new criteria need to be reported by the physician for each patient who joins the Registry.

Visit the Lay English Summaries of articles published by the EUMDS Registry about the topics below

READ MORE PATIENT-FRIENDLY SUMMARIES

  • Early platelet count kinetics has prognostic value in lower-risk myelodysplastic syndromes
  • Health-related quality of life in lower-risk MDS patients compared with age- and sex-matched reference populations: a European LeukemiaNet study.
  • Labile Plasma Iron Levels Predict Survival In Patients With Lower-Risk Myelodysplastic Syndromes
  • Erythropoiesis-stimulating agents significantly delay the onset of a regular transfusion need in nontransfused patients with lower-risk myelodysplastic syndrome
  • Impact of treatment with iron chelation therapy in patients with lower-risk myelodysplastic syndromes participating in the European MDS registry

MDS-RIGHT

If you found the articles above of interest to you, please also read on about MDS Right.

MDS-RIGHT (Providing the right care to the right patient with MyeloDysplastic Syndrome at the right time) is a research project that has been granted 6 million Euros from the Horizon2020 programme of the European Union. In this project – which started in May 2015 and will end in 2020 - fifteen European partners have joined forces. By comparing existing health care interventions and by defining and implementing more effective and safer interventions for elderly European citizens with anaemia and/or lower-risk MDS, the project aims to lead to better treatment compliance and more (cost-)effective use of healthcare resources.

https://mds-europe.eu/right “

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