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Myelodysplastic syndromes (MDS)

Transplant advances and outcomes

Myelodysplastic syndromes (MDS) affect about 10,000 people a year in the United States, although some estimates are higher. [1, 2] The median age at diagnosis is around 70 years. [3] More MDS patients are now eligible for allogeneic hematopoietic cell transplantation (HCT) than ever before. The development of reduced-intensity conditioning regimens makes HCT—which is the only potentially curative treatment option—more feasible for older patients. [4]

In March 2024, Medicare expanded coverage of HCT to patients with MDS, broadening access to transplant for older patients [5]. This determination followed a collaborative advocacy effort by NMDPSM, CIBMTR® (Center for International Blood and Marrow Transplant Research®), the American Society of Hematology (ASH) and the American Society for Transplantation and Cellular Therapy (ASTCT). [6]

Expanded access for older adults was also supported by a study from the Blood and Marrow Transplant Clinical Trials Network (BMT CTN 1102) published in the Journal of Clinical Oncology. This was a multi-center biologic assignment trial comparing reduced-intensity allogeneic HCT to hypomethylating therapy or best supportive care in patients aged 50–75 with advanced MDS. Results showed no significant difference in overall survival of patients with MDS aged 55–64 compared to those aged 65 or older and that HCT provides a significant survival benefit for older patients with MDS. [7]

Recommended timing for transplant consultation

High-resolution HLA typing is recommended at diagnosis for all patients with:

  • Any intermediate or high IPSS or IPSS-R score or moderate, high or very high IPSS-M score
  • Any MDS with poor prognostic features, including:
    • Treatment-related MDS
    • Refractory cytopenias
    • Adverse cytogenetics and molecular features
    • Transfusion dependence
    • Failure of hypomethylating agents or chemotherapy
    • Moderate to severe marrow fibrosis

Support for patients considering HCT for MDS

NMDP works as an extension of hematology/oncology practices to address patient needs beyond clinical care. The NMDP Patient Support Center team provides tailored information and assistance to patients from diagnosis through recovery after HCT. There is no cost to the patient or the hematology/oncology practice.

Patients and their loved ones can receive:

  • Step-by-step guidance from an NMDP patient navigator who specializes in HCT
  • Emotional and practical support
  • Navigation in their language from bilingual NMDP navigators and social workers (English and Spanish) and interpreter services 
  • Financial assistance, including a grant for patients who had HLA typing through NMDP HLA Today
  • Patient-friendly education in multiple languages and formats, including videos in English and Spanish
  • Peer support from patients and caregivers who have been through transplant 

References

  1. SEER*Explorer: An interactive website for SEER cancer statistics. Accessed July 9, 2025. Access
  2. American Cancer Society: Key statistics for myelodysplastic syndromes (MDS). Access
  3. Sekeres MA, Taylor J. Diagnosis and treatment of myelodysplastic syndromes: a review. JAMA. 2022;328(9):872-880. Access
  4. Karanes C, Nelson GO, Chitphakdithai P, et al. Twenty years of unrelated donor hematopoietic cell transplantation for adult recipients facilitated by the National Marrow Donor Program. Biol Blood Marrow Transplant. 2008;14(9, Suppl.):8-15. Access
  5. Centers for Medicare & Medicaid Services: Allogeneic hematopoietic stem cell transplantation (HSCT) for myelodysplastic syndromes (MDS). Updated March 6, 2024. Accessed December 13, 2024. Access
  6. Atallah E, Logan B, Chen M, et al. Comparison of patient age groups in transplantation for myelodysplastic syndrome: the Medicare Coverage with evidence development study. Access
  7. Nakamura R, Saber W, Martens MJ, et al. Biologic assignment trial of reduced-intensity hematopoietic cell transplantation based on donor availability in patients 50-75 years of age with advanced myelodysplastic syndrome. Journal of Clinical Oncology. 2021;39(30):3328-3339. Access
  8. NMDP and ASTCT Recommended Timing for Transplant Consultation. Download PDF
  9. National Comprehensive Cancer Network. Myelodysplastic syndromes. (Version 1.2023). Access