The mission of The National MDS Study (ClinicalTrials.gov Identifier: NCT02775383) is to build a resource that scientists can use to learn more about a group of rare bone marrow diseases called myelodysplastic syndromes (MDS). The National MDS Study will enable scientists to conduct research that will improve the way MDS is diagnosed and how it is treated.
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.
MDS are a group of a progressive bone marrow diseases characterized by failure of the bone marrow to generate normal blood cells. The bone marrow is the organ in the human body that makes blood cells that are essential for critical physiologic functions. These cells include platelets (also called thrombocytes) that make your blood clot, red blood cells (erythrocytes) that carry oxygen in your blood, and most of the white blood cells in our bodies that fight infection. For these cells to carry out their functions, they must be produced in adequate numbers and must be functioning normally. In patients with MDS, the blood cells that are produced are too few in number and they are dysfunctional.