The National MDS Study


The mission of The National MDS Study ( 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.

Interactive Inventory Browser

The MDS Interactive Inventory Browser is a dynamic publicly accessible database query tool that allows one to identify cohorts of interest from our study and perform research feasibility analysis based on the availability of clinical, lab, and genetic data. Access to the browser is pending. A link will appear below for public access.

Clinical Sites

This study is open to NCTN and NCORP sites in the NCI network. Information on how your site can participate is available in the Site Process Summary document at the link below.
Site Process Summary

In addition, the Physician Fact Sheet has a summary of the eligibility criteria and treatment plan for this study. Access the Physician Fact Sheet at the link below.
Physician Fact Sheet

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.

What is MDS

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.

Direct link to video