One of the HARMONY Alliance goals is to increase consistency in future studies, allowing for the results to be compared and combined. Therefore, HARMONY researchers are developing Core Outcome Sets (COS) for blood cancers.
Core Outcome Set (COS): A COS constitutes the minimum set of outcomes that should be collected and reported in future clinical trials to capture all relevant information, to better compare clinical trials and to advance novel treatment approaches faster. Novel blood cancer treatments are being tested in clinical trials across the world. Each trial uses its own outcomes to evaluate whether the treatment is effective. For instance, patients’ response to treatment may be described with complete remission, complete remission & Minimal Residue Disease negative, partial remission, or stable disease. This makes it difficult to compare and combine the study results. In addition, many studies do not assess long-term side effects of the drugs. As a result, it is difficult to draw firm conclusions about which treatments are optimal. A COS may offer a solution to these problems.
In the past, COS were often defined by individual stakeholder groups including patients, clinicians, health authorities and the pharmaceutical industry. In HARMONY, we now for the first time will come up with COS defined by all stakeholder groups in a collaborative effort, thereby ensuring that the new COS for Hematologic Malignancies will be of high value to everybody.
HARMONY Delphi Survey Team: “We are using so-called ‘Delphi Surveys’ to develop COS for blood cancers. We have run Delphi surveys for AML, MM, NHL, MDS, CLL, and ALL in the past years. We have used our experiences from these studies to design the March 2022 hackathons, in which we will address four additional types of blood cancer: Chronic Myeloid Leukemia (CML), Myeloproliferative Neoplasms (MPN), Hodgkin's Lymphoma (HL) and Waldenström Macroglobulinaemia (WM).
HARMONY Patient Cluster
The Delphi studies count on the collaboration of the HARMONY Patient Cluster to ensure that patient preferences are properly incorporated, and ethical procedures are guiding all stages of the project. The HARMONY Patient Cluster consists of nine European Patient Umbrella Organizations. The Patient Cluster and their patient communities are consistently involved in defining outcomes, designing Research Projects, and communicating with patients. Several patient organizations are involved in the March 2022 hackathons: CML Advocates Network, MPN Advocates Network, and Lymphoma Coalition.
Check our factsheets
For more information, patient folders to download and protocol documentation, visit the individual Delphi Survey web page
Watch our explanatory videos
The Delphi Surveys are organized by the HARMONY Alliance, a European public-private partnership for Big Data in Hematology. This unique consortium unites over 100 organizations, such as hospitals, universities, pharmaceutical companies, and patient organizations. By joining forces HARMONY aims to use big data analytics to improve the treatment of blood cancers.
The HARMONY Alliance is funded by the Innovative Medicines Initiative (IMI) (now called Innovative Health Initiative, IHI) of the European Commission and is currently running two projects: HARMONY (January 2017-June 2023) and HARMONY PLUS (October 2020-September 2023). In addition to the research projects that exploit the HARMONY Big Data Platform, the HARMONY Alliance is running Delphi surveys to develop core outcome sets (COS) for HMs, as well as Health Technology Assessment projects and multi-stakeholder activities.
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