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AML World Awareness Day: Your Voice Matters in Research!
Posted: Apr 21, 2024
AML World Awareness Day: Your Voice Matters in Research! image

April 21st, AML World Awareness Day, is dedicated to raising global understanding about acute myeloid leukemia (AML), a rare and challenging form of blood cancer. This year, we aim to raise awareness around the pivotal role patients play in advancing research for AML.

By participating in research, you become a partner in improving the future of AML treatment. Your involvement goes beyond taking medication in a clinical trial. Sharing your experiences, symptoms, and how your day to day is affected can also contribute to lifesaving improvements in how AML is treated. 

Making AML Research Better: Partnering with Patients

Research is crucial for developing newer and better treatments for AML. Traditionally, researchers relied solely on clinical trials to gather data, but today, they recognize the importance of also including the patient perspective. 

Real-world data (RWD) captures information about how AML is diagnosed and treated in everyday practice, including data from hospitals and patient registries. RWD comes from doctor visits, treatment records, and even mobile health apps. It provides a broader picture of how AML progresses and how patients respond to treatments in real-world settings and monitor long-term outcomes outside the controlled environment of clinical trials.

When the data is collected directly from the patient and by the patient, we talk about patient-reported outcomes or PROs. PROs can be the symptoms, side effects, and overall well-being you experience during treatment, reported directly by you. They can include things like fatigue, pain, anxiety, and how treatment affects your daily activities. They are a direct reflection of your journey, and sharing this information matters. Learning about PROs helps researchers move away from just considering disease markers as success measures and assesses the true impact of AML and treatment on a patient's life. This understanding ultimately leads to better decision-making when developing a treatment regimen for each patient. 

Why are RWD and PROs Important in AML?

AML is a complex disease with varying experiences for each patient. PROs and RWD help researchers understand these variations and have a more complete picture. This type of research can help:

  • Develop treatments that address a broader range of patients' needs and improve quality of life.
  • Identify potential side effects and areas for improvement in current treatments.
  • Better understand how AML progresses for different patients and how patients are treated outside clinical trials.

This information is crucial for developing more effective and patient-centered treatments for AML.

The Power of Patient Voices in Published Research

Here's how patient-reported data and real-world evidence are already making a difference in AML:

  • A study published recently used RWD to analyze real-world treatment patterns in the US and outcomes for AML patients outside clinical trials. These researchers revealed that despite the availability of newer treatment options, a significant portion of patients still received traditional chemotherapy regimens. This highlights the need for better AML risk assessment and potentially increased access to newer therapies for patients who benefit most, including older patients and whose disease is progressing again after treatment.
  • In another study published in 2022, patients were asked to report how fatigue and other symptoms influenced their quality of life after their AML diagnosis. This study emphasized that when starting AML treatment, it is important to consider not just survival rates but also how therapy affects patients' daily lives.
  • Researchers from the US, UK, and Canada interviewed AML patients and demonstrated the importance of including patients in the research design and decision-making process because patients' and physicians' priorities and treatment goals do not always align. 

These are just a few examples of how patient voices and their outcomes have made a significant impact on AML research.

Join HealthTree in Making a Difference!

There are many ways you can participate in research. Talk to your doctor about clinical trials or research studies that may be a good fit for you. Additionally, the HealthTree Foundation for AML offers resources to connect you with research opportunities. Contribute to AML research today by enrolling in HealthTree Cure Hub: 

CREATE A FREE ACCOUNT TODAY

By sharing your story, you become an active partner in shaping the future of AML treatment and improving the lives of patients.

The author Marta Llobet Canela

about the author
Marta Llobet Canela

Marta deeply believes that understanding how your body works is still a privilege today and that knowledge empowers. Leveraging her 9 years of experience in blood cancer, she translates complex medical jargon into easy-to-understand language, helping HealthTree’s mission to support patients staying informed about their disease and confidently participating in meaningful research. Outside of science, she enjoys trying new restaurants and hiking with her dog, Lia.

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