For Families
Leukemia - Cancer of the Blood
Bone marrow is a factory where our blood is made inside of our bones. The bone marrow produces white blood cells (which fight infections), red blood cells (which carry oxygen around the body), and platelets (which help the blood to clot). Leukemia is a cancer of blood cells. Leukemia cells (blasts) are blood cells that do not work properly and prevent healthy blood cells from growing. The main types of leukemia in children are acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML).
Familial Childhood Leukemia
Most childhood cancers are isolated events, that is, they come "out of the blue" and there is no reason to expect that they might occur. This kind of diagnosis is called "sporadic." However, in rare cases, childhood leukemia is not sporadic. In these cases, leukemia is due to a genetic predisposition. Familial leukemia occurs in more than one member of a family. The family members can be a sibling, a parent, grandparent, aunt, uncle, or cousins. Because of its rarity, little is known about familial childhood leukemia. More research needs to be done to learn the causes of familial leukemia. This can also teach us about the origins of leukemia in general. The International Familial Childhood Leukemia Registry is actively researching the genetic basis of familial leukemia. The Registry invites all patients with family histories of leukemia to consider helping with this research.
A New Scientific Study of the Causes of Familial Childhood Leukemia
- The International Familial Childhood Leukemia Registry is conducting a major study of genetic inheritance and environmental exposures in Familial Childhood Leukemia patients and their families.
- To collect a large group of subjects with familial leukemia, we ask that all familial childhood leukemia patients and their families consider participating.
- In addition to giving families and caregivers as much information as possible, it is critical that we continue to collect information on Familial Childhood Leukemia. The Registry conducts this important research in its major study looking at genetic inheritance in familial leukemia patients and their families.
We collect three kinds of material on familial childhood leukemia patients and/or family members:
- Clinical data on the events of a child's experience with leukemia and its treatment.
- Environmental and other exposure data from a comprehensive questionnaire and other medical records.
- Specimens for scientific investigation. The International Familial Childhood Leukemia Registry has established a biorepository of Blood/DNA/bone marrow for further study. We request blood samples or cheek swabs from patients or families for genetic analysis. We also collect bone marrow when available at the treating institution.
We are interested in studying certain genetic features of this disease from the standpoint of basic science. As we continue to collect data, we will share it with caregivers in as up-to-date a fashion as possible. The Registry will answer reasonable inquiries from family members especially to direct them to sources of information, but we will continue to turn families back to their local treating physicians for all decision making.
Patients' Rights
The protection of patients' rights is essential when collecting medical data. Hospitals and physicians are extremely cautious about releasing medical data; many safeguards are in place. This study, protocol number 1207012660, has been reviewed and approved by the Weill-Cornell Medical College/NewYork-Presbyterian Hospital Institutional Review Board (IRB), which looks at every research activity to ensure that patients' privacy is protected. We never disclose a patient's or family's identity or identifying information.
We encourage all children with leukemia and their families to consider participating in this important research effort.
