The Healthcare Alliance for Resourceful Medicines Offensive against Neoplasms in Haematology (HARMONY) is working to define a set of treatment outcomes (COS) by using a multi-round survey (known as a Delphi survey) to reach consensus amongst patients and other stakeholder groups.
The HARMONY Alliance is a public-private partnership of more than 80 organizations (53 Partners and 32 Associated Members from 22 countries funded by the Innovative Medicines Initiative for a period of 5 years (2017-2021). Myeloma Patients Europe (MPE) is part of the HARMONY Patient Cluster which is a unique group of 7 European Patient Umbrella Organizations working in the different areas of haematological diseases within the HARMONY Alliance.
Survey for myeloma patients and stakeholders
HARMONY Alliance needs the help of myeloma patients to define a set of treatment outcomes that is crucial and meaningful for them.
This “Core Outcome Set” (COS) will be developed using a multi-round survey (known as a Delphi survey) to reach consensus amongst patients and other stakeholder groups.
The consensus reached through the survey will develop the COS, which will form a recommendation of what should be measured and reported in all clinical trials in myeloma. This is important to ensure that the measurement of outcomes is consistent, comparable and that outcomes important to patients are also captured across clinical trials.
Alongside patients, other stakeholder groups participating in the survey are doctors, regulators and representatives from the pharmaceutical industry.
You are therefore invited to participate in this survey to give your opinion on what treatment outcomes are important for myeloma patients and what you think is important to measure in myeloma clinical trials.
To decide on your involvement, please read the following information about the planned survey here.
Myeloma Patients Europe relies on the valuable input of patients in important research such as this. The views and opinions that you share help to influence and inform research, and the future of myeloma care and treatment across Europe.
If you would like to be involved in more studies, activities, events, or in any way with MPE, your contribution is very welcome! Please get in touch with us here to tell us more about yourself and how you would like to get involved.