NHLBI-MDS – The National Myelodysplastic Syndromes (MDS) Study

The purpose of The National MDS Study is to build a resource that scientists can use to learn more about a group of rare bone marrow diseases called myelodysplastic syndromes (MDS). This resource will enable scientists to conduct research on how to improve the ways MDS is diagnosed and treated. The study will also help scientists, patients, and their families better understand what to expect when a patient is diagnosed with MDS.

Physician and Research Staff Educational Materials:

These materials are intended for promotional use among health care professionals and are NOT intended for use as patient educational materials.

Patient Educational Materials:

Participating sites should note that the Central Institutional Review Board (CIRB) has approved this material. It is available to site staff at the Clinical Trials Support Unit website (www.ctsu.org). A user name and password is required. Find the material by searching for the protocol named NHLBI-MDS. In that section, click on the main Documents tab, then the CIRB Documents tab, and then the Amendment Reviews tab.

  • Participant Information Cards: Pocket-sized cards with follow-up and site contact information for all study participants (baseline and the longitudinal cohort).

Information and Assistance from the National Cancer Institute:

  • Trained information specialists at the NCI are available to answer cancer-related questions from patients, family members or friends, health care providers, and researchers. Visit the NCI’s Cancer Information Service webpage for contact instructions, including telephone, live chat, email, and mail.

Additional Information on Cancer.gov: Displayed below is an interactive view of the study record as it appears in the government registry. If you are experiencing technical difficulties with this view, visit clinicaltrials.gov and search for record NCT02775383.