GROUP FOR RESEARCH ON ADULT ACUTE LYMPHOBLASTIC LEUKEMIA
Organization address
address: CENTRE HOSPITALIER LYON SUD SERVICE D'HEMATALOLOGIE MARCEL BERARD SECTEUR 1G
city: PIERRE BENITE
postcode: 69495
website: n.a.
Despite significant recent progress in the field of hematological malignancies (HMs), with increasing survival rates and improvement in quality of life, many children and adults with HMs still die from these disorders or experience disabling complications. Therefore, improvement of health care of HMs is an unmet medical need. Thus, it is important to define and align standard and efficient sets of HMs outcomes to measure and evaluate HM data for clinical decisions, long term risk/benefit profile, reimbursement, value analysis, and clinical trials design. Improving outcome measures and endpoint definitions by taking into account “real-life” data and differences in cross-national healthcare practice will undoubtedly result in an optimized, sustainable and effective treatment delivery, as well as in desirable and innovative accelerated pathways for novel drug availability. All these challenges will be addressed within a pan-EU perspective by HARMONY (Healthcare Alliance for Resourceful Medicines Offensive against Neoplasms in HematologY), a comprehensive public-private European consortium of excellence.
HARMONY consortium is made up of 51 partners: 44 participants from 10 European countries and 7 pharmaceutical companies from the EFPIA. HARMONY aims to assemble, assess, connect, and analyze heterogeneous HM patient derived Big Data sets to define sets of outcome indicators that can be used for decision-making by key healthcare stakeholders. The consortium will orchestrate leading experts and working cooperative groups in HMs, European study alliances, pharmaceutical market leaders, patient advocacy groups, HTA and regulatory agencies, to: (i) optimize Europe-wide data collection and create a high-quality HM data repository for further explorative studies; (ii) establish a clinical data-sharing platform that empowers clinicians, patients and policy stakeholders to improve decision-making procedures and identify appropriate treatments to patients with HMs
Deliverables
List of deliverables.
“Proof-of-Principle†study
Other
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Case management: Security and Governance FW
Other
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Guidance document on incidental findings
Documents, reports
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Website and repository
Other
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Communication strategy and plan
Documents, reports
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HARMONY platform component deployment
Other
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Definition of all sets of outcomes for individual HMs
Other
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Point of contact/advisors
Documents, reports
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Policy Health Stakeholder Feedback Forum (PHSFF) members identified and established
Ellen P.B. de Waal Hematology and Big Data published pages: e17, ISSN: 2572-9241, DOI: 10.1097/hs9.0000000000000017
HemaSphere 1/1
2020-04-24
2018
Malcikova, J.; Tausch, E.; Rossi, D.; Sutton, L. A.; Soussi, T.; Zenz, T.; Kater, A. P.; Niemann, C. U.; Gonzalez, D.; Davi, F.; Gonzalez Diaz, M.; Moreno, C.; Gaidano, G.; Stamatopoulos, K.; Rosenquist, R.; Stilgenbauer, S.; Ghia, P.; Pospisilova, S. ERIC recommendations for TP53 mutation analysis in chronic lymphocytic leukemia—update on methodological approaches and results interpretation published pages: , ISSN: 0887-6924, DOI: 10.5167/uzh-151201
\"Leukemia, Nature Publishing Group: Open Access Hybrid Model Option B, 2018, 32 (5), pp.1070-1080. ⟨10.1038/s41375-017-0007-7⟩\" 1
2020-04-24
2020
Matteo Bersanelli, Ettore Mosca, Luciano Milanesi, Armando Bazzani, Gastone Castellani Frailness and resilience of gene networks predicted by detection of co-occurring mutations via a stochastic perturbative approach published pages: , ISSN: 2045-2322, DOI: 10.1038/s41598-020-59036-w
L. Bullinger, P. Valk, J. Versluis, K. Metzeler, R. Ayala, Martinez J. Lopez, H. Dombret, P. Montesinos, J. Sierra, C. Preudhomme, F. Damm, K. Mills, J. Mayer, C. Thiede, M. T. Voso, S. Amadori, W. Hiddemann, G. Sanz, M. Vukcevic, P. Bacon, Villoria R. Medina, M. Van Speybroeck, R. Goodbody, R. Schulze-Rath, J.-E. Butler-Ransohoff, J. M. Hernández, F. Lo-Coco, B. Huntly, H. Döhner, G. Ossenkoppe HARMONY ALLIANCE: EUROPEAN PUBLIC-PRIVATE DATA COLLECTION LEADS THE WAY - FIRST RESULTS OF THE “PROOF-OF-PRINCIPLE†STUDY IN ACUTE MYELOID LEUKEMIA published pages: 451, ISSN: 2572-9241, DOI: 10.1097/01.hs9.0000562308.58356.23
Miklós Szócska, Sahan Jayawardana, Carin Smand, Tayyab Salimullah, Catherine Reed and Shahid Hanif BIG DATA FOR BETTER OUTCOMES: SUPPORTING HEALTH CARE SYSTEM TRANSFORMATION IN EUROPE published pages: , ISSN: 1356-1030, DOI:
Eurohealth — Vol.23 | No.1 | 2017
2020-04-24
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The information about "HARMONY" are provided by the European Opendata Portal: CORDIS opendata.
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