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Myelodysplastic Syndromes

Myelodysplastic syndromes (MDS) constitute a rare category of bone marrow disorders. These syndromes are characterized by inadequate production of healthy blood cells in the bone marrow, leading to the accumulation of abnormal cells that overcrowd the marrow, called blasts. Consequently, the body may struggle to generate enough red or white blood cells and platelets, leading to cytopenias. In fact, 85% of patients newly diagnosed with MDS experience anemia and become transfusion dependent. Over time, myelodysplastic syndromes tend to progress, and in some instances, they may transform into acute myeloid leukemia (AML), a fast-growing cancer. It is estimated that approximately 1 in 3 individuals with MDS will eventually develop AML.

The Association of Cancer Care Centers (ACCC) has developed two separate initiatives which aim to improve optimization of care in the management of anemia for specific subsets of MDS patients based on risk. These initiatives aim to collect baseline data, develop sustainable interventions and supporting resources that address barriers, and to provide resources that support patients and caregivers.

Optimal Management of Anemia in Adults With High Risk MDS

The treatment approach for MDS varies based on risk groups. For low-risk patients, treatment is aimed at reducing transfusion dependence, alleviating cytopenias, and enhancing quality of life. In contrast, high-risk patients require a different strategy, focusing on delaying leukemic progression and prolonging survival. This initiative involved a comprehensive review of risk stratification, identifying optimal management of anemia specifically in the high-risk group, and addressing barriers faced by patients with high-risk MDS.

A Multidisciplinary Approach to Anemia Management in High-Risk MDS and AML
[Video Podcast] Ep 42

Anemia can negatively affect quality of life and treatment outcomes for patients with high-risk myelodysplastic syndrome (MDS) and acute myeloid leukemia. In this episode, experts discuss an array of patient-centered approaches, social determinants of health, and collaborative measures to support care coordination in the management of anemia in patients with high-risk myelodysplastic syndrome and acute myeloid leukemia.
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This initiative is supported by Gilead.


Anemia Mitigation & Optimal Care for MDS Patients

More than two thirds of MDS patients fall in the low-risk category, with anemia as the most common symptom. This initiative consists of two phases that aim at providing support and guidance for healthcare professionals in effectively managing anemia in patients with low-risk MDS. Through focus groups, ACCC identified barriers within the community that hinder the optimal management of anemia in this specific patient population. Quality improvement studies are currently underway to target cancer programs and help address barriers to adoption of evidence-based treatment of anemia in low-risk MDS.

Defining and Managing Erythropoietin Stimulating Agents (ESAs) Failure in Patients with Low-Risk MDS
[Video Podcast] Ep 44

Anemia presents a significant challenge in the management of patients with low-risk myelodysplastic syndromes (MDS). As clinicians focus on maintaining quality of life, it is necessary to understand the care sequencing of anemia treatment in patients with low-risk MDS. In this episode,  experts review key considerations and emerging trends for the treatment of anemia in the low-risk MDS population.  
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This initiative is supported by Bristol Myers Squibb.

Contact Us

For more information on any of these projects, please contact the ACCC Provider Education department.