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Providing the right care to the right patient with MyeloDysplastic Syndrome at the right time (MDS-RIGHT)
Start date: May 1, 2015, End date: Apr 30, 2020 PROJECT  ONGOING 

Myelodysplastic syndromes (MDS) are chronic bone marrow malignancies of the elderly, complicated by severe anaemia. MDS significantly affects quality-adjusted survival and it imposes an increasing financial burden on patients and healthcare (HC) systems. The burden of disease is expected to worsen in the future, given the aging EU population and newly identified MDS cases among those diagnosed with ‘Anaemia of the Elderly’. EUMDS - a unique registry with prospective, observational data on 1600 lower-risk MDS patients from 16 EU countries - enables comparison of existing MDS HC interventions (HCI).Objectives1) Comparison of outcomes and costs of existing HCI, using established and new core outcome sets. This, alongside health technology assessment, will provide robust evidence to underpin sustainable use of HC resources;2) Enhanced compliance with diagnostic procedures in MDS by introducing new minimally-invasive diagnostic methods. This will increase the number of correctly and timely diagnosed MDS patients;3) Raised awareness of the relevance of obtaining the right diagnosis in elderly by comparing HRQoL between EUMDS and against a non-MDS cohort. This will improve HRQoL of individual patients through better tailoring of HCI;4) Better outcome predictability of available HCI by refining classification of cases using molecular characterisation to incorporate response to HCI and to provide evidence for personalised medicine;5) Improved, evidence-based, guidelines supporting the regulatory process, and providing information to patients and physicians to promote personalised decisions in MDS care;6) Establishment of a European MDS competence network encompassing all stakeholders in the MDS field.RelevanceBetter treatment compliance, a more evidence-based use of HCI and an increasing tailored use of existing HC options will contribute to an efficient and cost effective (personalised) use of HC resources for elderly patients with MDS and their co-morbidities.
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