The NCI IBMFS Cohort Study brochure is available for patients and families.

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[glossary term:] Inherited bone marrow failure [glossary term:] syndromes (IBMFS) are rare disorders; usually these patients have some form of [glossary term:] aplastic anemia (failure of the bone marrow to produce blood), and may have a family history of the disorder. There are several well-described syndromes that can be recognized by healthcare experts either by physical characteristics in the patients or from laboratory findings. There are also patients who are harder to classify.

Patients with these syndromes are of interest to the NCI because they have have a very high risk of developing [glossary term:] cancer (either [glossary term:] leukemia or certain solid tumors). At the moment, we cannot predict which specific patient with an IBMFS is going to develop cancer, and we want to study all patients with an IBMFS to learn more about those without and those who may develop cancer.

The NCI IBMFS [glossary term:] Cohort Study enrolls families from North America that have at least one member with an IBMFS. The study includes individuals known to have an IBMFS as well as their first degree relatives (brothers, sisters, parents, and children) as well as other relatives where appropriate.

Our overall goal is to reach a better understanding of how cancers develop in persons with IBMFS, so that we may improve the health care that can be offered to persons with these disorders.

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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