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Using the HARMONY Big Data Platform to improve the quality of life of patients with CML

November 14, 2023 15:55 - x 00, 0 - 00:00

#bigdataforbloodcancer, CML

The HARMONY Alliance has recently launched three new research projects in the field of chronic myeloid leukemia (CML). These projects are unique because they focus on the quality of life of CML patients. The side effects of CML treatments may severely affect patients’ quality of life. Through these projects, the goal is to gain further understanding of the anticipated side effects linked with the therapy choices that are accessible. Being aware of these effects will give patients and physicians the evidence to make more informed treatment decisions. 

Tyrosine kinase inhibitors (TKIs) are life-saving drugs that are commonly used to treat CML. Multiple types of TKI and treatment regimens may be used to treat the disease. The exact treatment plan is currently based on multiple factors, including disease stage and severity; age and comorbidities of the patient; and financial aspects. The expected side effects of the treatment may also affect therapy choices.

Devastating impact

Side effects may have a severe impact on patients’ quality of life. Patients that take TKIs may experience fatigue, pain, nausea, skin or hair problems, muscle cramps and bowel disturbances such as constipation and diarrhea. These side effects can seriously impair their quality of life. For instance, feeling exhausted all day or suffering from diarrhea may not be a high-grade side effect, but is a very serious problem that affects the social and professional life of a patient. As a result, side effects may affect treatment compliance and success. This is an important factor to consider when choosing a particular treatment regimen.

Eglys González of HARMONY Partner CML Advocates Network: “In clinical trials, toxicity was usually not reported in much detail or related to the patients' quality of life. For instance: when did these patients experience nausea or fatigue, for how long and how often? And what were the characteristics of the patients that suffered from these side effects: were they old, did they have specific comorbidities, or were they the ones with a more severe form of CML? Such details make a big difference. Therefore, we want to obtain a more complete overview of the side effects associated with various types of TKI treatment and the patient’s own conditions.”


Three CML Research Projects on QoL

The CML research team, guided by the patient advocate partners, has designed three related research projects that each address a different aspect of the overarching research topic. In the first project, the team will produce an overall description of short-term and long-term side effects and the correlation with the patients’ quality of life. The second project will address the correlation of side effects with patient characteristics (e.g., gender, age, ethnicity, and comorbid conditions), disease characteristics (e.g., disease stage and genetic characteristics of the tumor cells), and therapy-related factors (e.g., treatment compliance and success). In the third project, the researchers aim to better understand the expected symptoms and side effects associated with different types of TKI therapies.

Taken together, these projects will provide more detailed knowledge of the side effects associated with the available TKIs. “It will be empowering for patients and carers to know what to expect, and it will inform hematologists to optimize the management of CML patients. Moreover, patients may use this information to weigh the costs and benefits of the available treatment options in consultation with their doctors,” explains González.

Read more about the HARMONY Alliance CML Research Projects to improve the quality of life:

Laborious task

Setting the projects in motion was a laborious task: “We started by gathering a group of HARMONY experts and organizing meetings to jointly define the research questions. We wrote the research project proposals and then started attracting more experts, including statisticians, data analysts and clinicians”, explains Eglys González.

The next – crucial – step was to find the required quality-of-life data. The team compiled a list of academic institutes and pharmaceutical companies that had gathered detailed quality-of-life data as part of clinical trials. Some of these institutions were HARMONY Alliance Partners, others were not. González: “We went to scientific conferences and other meetings to present our projects and continuously encourage people to upload their data sets to the HARMONY Big Data Platform. We are very grateful to the academic institutes and pharmaceutical companies who decided to share their data for this important research.”

Public-private data sharing to facilitate Big Data research in CML to improve the quality of life:

Patient empowerment

The CML research projects are the latest asset to the portfolio of ongoing HARMONY Alliance research projects that make use of the HARMONY Big Data Platform. In these research projects, public institutions, patient organizations, and pharmaceutical companies have joined forces in various combinations, with the aim of improving the lives of patients with blood cancers. 

Jan Geissler, HARMONY Partner CML Advocates Network: “The three new patient-initiated CML research projects are the first to incorporate quality-of-life data and patient-reported outcomes, which is quite a milestone. Our hope is that these projects will produce unique insights that will truly empower patients in the future and change the way the clinical teams deal with optimizing quality of life.”

The HARMONY Alliance research portfolio includes more projects in the field of CML:

#Bigdataforbloodcancer: Revolutionizing the use of big data in Hematologic Malignancies research.
 When the HARMONY Alliance started in 2017, the hematology community was embarking on a journey towards embracing data sharing and recognizing the transformative power of big data. HARMONY set a crucial milestone when this endeavor was only starting. By laying the foundation for future collaborations, advancements, and discoveries that would incorporate state-of-the-art technologies in the field of hematology, HARMONY is making its contribution to improve the understanding and treatment of blood disorders. Now, just almost seven years later with 128 partners from 28 countries, we have transformed both the sharing and use of data. We have developed the Big Data Platform with a data lake that has identified over 160,000 patient records. All data is protected using a unique anonymization and security process. In more than 30 research projects, groundbreaking research is being carried out with the help of advanced customized data analytic services, including AI modelling.

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