Leukemia Trial

Observation of Myelodysplastic Syndromes

Tissue Collection and Natural History Study of Patients with Myelodysplastic Syndrome or Myeloproliferative Neoplasms (The National 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. For more information, visit TheNationalMDSStudy.net.


Physician and Research Staff Educational Material

This material is intended for promotional use among health care professionals and is NOT intended for use as patient educational material.

    • Physician Fact Sheet: schema, eligibility criteria, and treatment details
    • Pocket Reference Card: trial schema, study objectives, and eligibility requirements on a pocket-sized card for easy reference when consulting with patients in the office or on rounds
    • Site Process Summary: schema, objectives, and details about how your site can participate
    • GlobalTrace Procedure Updates: updates regarding the NHLBI-MDS study, including procedures for entering Bone Marrow Kits into GlobalTrace and new instructions for handling expired specimen collection kits
    • Slide Presentation: The Fundamentals of Immunotherapy in AML and MDS

Patient Educational Material

Participating sites should note that the Central Institutional Review Board (CIRB) has approved this material. It is available to site staff at the Cancer 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

    • Locations and other information
    • 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.

ClinicalTrials.gov ID: NCT02775383

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