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.
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.
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:
This information is crucial for developing more effective and patient-centered treatments for AML.
Here's how patient-reported data and real-world evidence are already making a difference in AML:
These are just a few examples of how patient voices and their outcomes have made a significant impact on AML research.
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:
By sharing your story, you become an active partner in shaping the future of AML treatment and improving the lives of patients.
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.
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.
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:
This information is crucial for developing more effective and patient-centered treatments for AML.
Here's how patient-reported data and real-world evidence are already making a difference in AML:
These are just a few examples of how patient voices and their outcomes have made a significant impact on AML research.
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:
By sharing your story, you become an active partner in shaping the future of AML treatment and improving the lives of patients.
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.