Inherited Bone Marrow Failure Syndrome Study (IBMFS)

Our Goal

To reach a better understanding of how cancers develop in persons with an Inherited Bone Marrow Failure Syndrome, so that we may improve the health care that can be offered to persons with these disorders.


Inherited bone marrow failure syndromes (IBMFS) are a group of rare disorders of the bone marrow that can result in a number of medical conditions, including a high risk of cancer. Over the past several decades, researchers and clinicians at the National Cancer Institute (NCI) have studied individuals with these syndromes in order to better understand their genetic causes and medical complications. Our overall goal is to improve the health care for persons with these disorders.

The NCI IBMFS Cohort Study enrolls families that have at least one member with an IBMFS. The study includes individuals with the IBMFS, their first-degree relatives (brothers, sisters, parents, and children), as well as other relatives when appropriate. There have been many medical advances as a result of the study, including the identification of several new genetic causes of IBMFS.

This study would not be possible without the participation of individuals and families. If you or someone you know has been diagnosed with an IBMFS and are interested in joining the study, please contact our research nurse on 1-800-518-8474, or email nci.ibmfs@westat.com.

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How can I join?

Individuals with one of the inherited bone marrow failure syndromes and their family members are encouraged to participate.

Phone: 1-800-518-8474 to speak with the referral nurse
Email: NCI.IBMFS@westat.com