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Work Package 2: Definition of Outcomes

 

WP2 is focused on defining the specific questions that are relevant to each hematological malignancy (HM). The coordination of the data that emerges will ensure that results will be generally applicable to patients with blood cancers. WP2 will define what outcomes need to be achieved in terms of each type of blood malignancy, including both clinical outcome measures and the description of which factors are relevant for both patients and caregivers. Check the HARMONY Research Projects >


 

Read about the Delphi Survey to Develop a Core Outcome Set (COS) for Acute Myeloid Leukemia. A COS constitutes the minimum set of outcomes that should be collected and reported in future clinical trials. Download the Delphi AML Study Protocol document to read more and to have an overview of the full outcome list in the annex. 


Objectives


WP2 Partners

AEMPS, AIEOP, Amgen, Barts Health, Bayer, Celgene, BfArM, Erasmus MC, ERIC, FISM Onlus, GFM, Goethe University, GPOH, GRAALL, HHU, HULAFE, IECSCYL-IBSAL, IJC, Janssen, LeukaNET, LMU, LYSA, Menarini, MU, Newcastle University, NICE, Novartis, OPBG, SYNAPSE, Takeda, University of Ulm, UNAM, UNIBO, UNITO, University of Cambridge, University of Navarra, University of Rome Tor Vergata, VHIO, VUMC.


Achievements WP2

WP2 has identified big data sets relevant to HARMONY, contributed to the platform set-up, initiated an AML pilot study and embarked on the definition of standard core outcome sets for hematologic malignancies. WP2  has made considerable progress in assembling and categorizing critical information about HMs:

Achievements 2018:

 

Achievements 2017:

In 2017, the team of WP2 has mapped the data sources to the pilot run (in collaboration with WP3); reached a consensus on data de-identification using a “de-facto anonymization” or double-brokerage pseudonymization, and outlined the description of technical concepts such as "pseudonymization" and “hashing” (in close interaction with WP8). Finally, in collaboration with WP1, the Associated Member Agreements were put in place.

Outlook

WP2 will continue to focus on:

Deliverables

Download our deliverables for an extended view on WP2:


Work Package Leadership