Currently, several new drugs are being tested in clinical trials, aiming at improving the treatment of haematologic malignancies (HM).

These trials, however, measure different results - also called treatment response, or outcomes - which makes it difficult to compare and combine all this information.

Lars Bullinger (Charité Hospital in Berlin) makes the following observations:

“For instance, researchers may use a variety of parameters to describe response to treatment: complete remission, complete remission with incomplete hematologic recovery; complete remission and MRD negative; partial remission; or stable disease.

In addition, the majority of clinical trials do not assess long-term side effects and their influence on the patients’ quality of life.

A core outcome set (COS) may offer a solution to these problems.”

This survey asks AML patients about which specific results they think are important to measure in AML clinical trials based on their experiences and establish a core outcome set.

With of help of AML patients The HARMONY Alliance will ensure that in future clinical trials appropriate outcomes are measured, those that are important not only to health care professionals but also to patients.

To maximize participation please feel free to share this invitation.

Following the start of this pilot, further disease-specific core outcome set studies will be planned for each of the 7 haematological cancers.

The results of these surveys will be used to select what is important to measure (the outcomes) in all future clinical trials - based on patient experiences and preferences.

This is a REALLY important piece of work and you can have an impact on its results!