About the National MDS Study

The National MDS Study will establish a cohort of 2,000 adults recently diagnosed with MDS and 500 adults with idiopathic cytopenia of undetermined significance (ICUS). These volunteers will donate biological specimens (like bone marrow and blood) and medical information, including details of their symptoms, how they perceive their quality of life, the treatments they receive, and what their doctor says about the severity of their illness over time. This information will be collected at pre-determined time points for the duration of the study.  Study participants may be followed for life.

Participants will be enrolled in the National MDS Study at clinics in the U.S. that are part of the NCI Clinical Trials Network (NCTN) or the NCI Community Oncology Research Program (NCORP). Biological specimens will be stored at M2Gen, a wholly owned subsidiary of the Moffitt Cancer Center. Clinical data will be collected at the NCTN and NCORP centers and stored at the study’s Data Coordinating Center, The EMMES Corporation.

The primary objective of the National MDS Study is to create a comprehensive, standardized longitudinal clinical data set linked to consistently processed, well-annotated biospecimens that can be used by scientists interested in MDS research. Potential uses for this resource include: (1) identifying genetic, epigenetic and biological factors associated with initiation and progression of MDS; (2) uncovering fundamental information on the changes that occur in hematopoietic stem cells and bone marrow stroma in patients with MDS, and how this differs from what happens during normal aging; (3) discovering biomarkers of disease onset or progression, or response to therapy; (4) identifying potential targets for new therapeutic interventions; and (5) improving clinical management of MDS patients.