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Providing the right care to the right patient with MyeloDysplastic Syndrome at the right time

Objective

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).
Objectives
1) 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.
Relevance
Better 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.

Call for proposal

H2020-PHC-2014-two-stage
See other projects for this call

Funding Scheme

RIA - Research and Innovation action

Coordinator

STICHTING KATHOLIEKE UNIVERSITEIT
Address
Geert Grooteplein Noord 9
6525 EZ Nijmegen
Netherlands
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 1 815 851

Participants (15)

UNIVERSITY OF YORK
United Kingdom
EU contribution
€ 1 348 893,25
Address
Heslington
YO10 5DD York North Yorkshire
Activity type
Higher or Secondary Education Establishments
MEDIZINISCHE UNIVERSITAT INNSBRUCK
Austria
EU contribution
€ 154 926,25
Address
Christoph Probst Platz 1
6020 Innsbruck
Activity type
Higher or Secondary Education Establishments
GROUPE FRANCOPHONE DES MYELODYSPLASIES
France
EU contribution
€ 421 221
Address
Hopital St Louis Sce Hemato Seniors Avenue Claude Vellefaux 1
75010 Paris
Activity type
Research Organisations
KAROLINSKA INSTITUTET
Sweden
EU contribution
€ 455 543,75
Address
Nobels Vag 5
17177 Stockholm
Activity type
Higher or Secondary Education Establishments
STIFTUNG ELN FOUNDATION
Germany
EU contribution
€ 296 875
Address
Pettenkoferstrasse 22
68169 Mannheim
Activity type
Other
WESTFAELISCHE WILHELMS-UNIVERSITAET MUENSTER
Germany
EU contribution
€ 440 602,75
Address
Schlossplatz 2
48149 Muenster
Activity type
Higher or Secondary Education Establishments
UNIVERSITA DEGLI STUDI DI PAVIA
Italy
EU contribution
€ 150 905
Address
Strada Nuova 65
27100 Pavia
Activity type
Higher or Secondary Education Establishments
STICHTING VU

Participation ended

Netherlands
EU contribution
€ 0
Address
De Boelelaan 1105
1081 HV Amsterdam
Activity type
Higher or Secondary Education Establishments
THE LEEDS TEACHING HOSPITALS NATIONAL HEALTH SERVICE TRUST
United Kingdom
EU contribution
€ 35 145
Address
St James's University Hospital, Beckett Street
LS9 7TF Leeds
Activity type
Public bodies (excluding Research Organisations and Secondary or Higher Education Establishments)
UMIT- PRIVATE UNIVERSITAT FUR GESUNDHEITSWISSENSCHAFTEN, MEDIZINISCHEINFORMATIK UND TECHNIK GMBH
Austria
EU contribution
€ 212 938,25
Address
Eduard Wallnoefer Zentrum 1
6060 Hall In Tyrol
Activity type
Higher or Secondary Education Establishments
FONDAZIONE G.I.M.EM.A. - FRANCO MANDELLI ONLUS
Italy
EU contribution
€ 44 931,50
Address
Via Casilina 5
00182 Roma
Activity type
Research Organisations
FUNDACION PARA LA INVESTIGACION DEL HOSPITAL UNIVERSITARIO LA FE DE LA COMUNIDAD VALENCIANA
Spain
EU contribution
€ 35 145
Address
Av Fernando Abril Martorell 106
46026 Valencia
Activity type
Research Organisations
FUNDACION INSTITUTO DE ESTUDIOS DE CIENCIAS DE LA SALUD DE CASTILLA Y LEON
Spain
EU contribution
€ 35 145
Address
Parque Santa Clara
42002 Soria
Activity type
Research Organisations
ACADEMISCH ZIEKENHUIS GRONINGEN
Netherlands
EU contribution
€ 408 656,25
Address
Hanzeplein 1
9713 GZ Groningen
Activity type
Higher or Secondary Education Establishments
STICHTING VUMC
Netherlands
EU contribution
€ 143 218,75
Address
De Boelelaan 1117
1081 HV Amsterdam
Activity type
Research Organisations