What is the NCI IBMFS Cohort and Who is Eligible?
[D]
The NCI IBMFS Cohort consists of affected individuals and their immediate families in North America
who have an inherited
bone marrow failure
syndrome
(IBMFS), either one that has been specifically identified and defined,
or bone marrow failure which 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
which is followed over time to analyze the medical events which
occur in each person.
The most common of the IBMFS are:
There will be two subgroups of study participants in the NCI IBMFS
Cohort: those who are seen and evaluated at the NIH Clinical Center
(called the CC IBMFS Cohort), and those who participate by providing
information but who are not seen by the NCI team at the NIH (called
the Field IBMFS Cohort).
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