The National MDS Study

Welcome

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 study will also enable scientists, patients, and their families to better understand what to expect when a patient is diagnosed with MDS. The National MDS Study is sponsored by the National Heart, Lung, and Blood Institute (NHLBI) in collaboration with the National Cancer Institute (NCI).

 

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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. If you do not have a login, a “Registration Form” needs to be completed and submitted.  Once an account has been approved an email will be sent with initial log in instructions.

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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.

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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.

Should I join a clinical trial?

If you are considering joining a clinical trial such as the National MDS Natural History Study, we recommend first learning about the trial's goals and how involvement in the study may benefit you and/or society. Please remember to always consult with your physician to ensure that you meet study criteria and that your participation in the study will not negatively impact any current treatment or underlying conditions. If you are interested in additional general information about clinical trials, please click here to access a March 2023 article published in The Washington Post's personal health section, Well+Being, where MDS Study Chair, Dr.Mikkael Sekeres , offers expert advice.