Etiologic Investigation of Cancer Susceptibility
in Inherited Bone Marrow Failure Syndromes (IBMFS)
The National Cancer Institute Institutional Review Board has given
its approval to open a study entitled "Etiologic Investigation
of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes."
The principal investigator responsible for this study is Blanche P.
Alter, MD, MPH. This study is open to patients with SDS, along with
their immediate families. Individuals with one of the inherited bone
marrow failure syndromes, and their parents, brothers, sisters, and
children, are all invited to participate. Those who come to the NIH
Clinical (CC) will belong to the "CC Cohort," and those
who do not will belong to the "Field Cohort." Individuals
who choose to participate in the NCI IBMFS [Alter, Blanche (NCI)]
Cohort Study will be asked to complete a family history questionnaire
and an individual information questionnaire. Physical examinations
and samples of blood, bone marrow (from those affected with the disorder),
and other tissues may be requested for research studies.
Inherited bone marrow failure syndromes (IBMFS) are rare disorders
in which there is usually some form of aplastic anemia (failure of
the bone marrow to produce blood), associated with a family history
of the same disorder. Some of these conditions have typical changes
in physical appearance or in laboratory findings which suggest a specific
diagnosis. There are several well-described syndromes, which can be
recognized by health care experts. There are also patients who are
harder to classify, but who appear to belong in this category. Patients
with these syndromes have a very high risk of development of cancer
[Alter, Blanche (NCI)] (leukemia or solid tumors). At the moment we
cannot predict which specific patient with an IBMFS is going to develop
cancer. The NCI IBMFS [Alter, Blanche (NCI)] Cohort Study will enroll
North American families in which at least one member has or had an
IBMFS.
The web page "marrowfailure.cancer.gov"
describes the study and provides contact information. By telephone,
please contact Lisa Leathwood 1-800-518-8474 or you may also contact
SDSF for more information. |
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