About this Study

The NCI IBMFS [glossary term:] Cohort Study consists of affected individuals and their immediate families in North America who have an [glossary term:] inherited bone marrow failure [glossary term:] syndrome (IBMFS)-either one that has been specifically identified and defined, or bone marrow failure that appears to be inherited but has not yet been clearly identified as having a genetic basis.

A cohort is a group of carefully defined and thoroughly evaluated study participants. This cohort is followed over time, with the aim of documenting and analyzing each individual’s medical events.

Our study activities

The most common of the IBMFS are:

There are two subgroups of participants in the NCI IBMFS Cohort Study: those who are seen and evaluated at the NIH Clinical Center, and those who participate by providing information and samples of blood, bone marrow, or other tissues as needed, but who are not seen by the NCI team at the NIH.

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How can I join?

Individuals with one of the [glossary term:] inherited bone marrow failure [glossary term:] 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