The National Cancer Institute (NCI) is studying families with multiple cases of chronic lymphocytic leukemia (CLL), the most common leukemia in adults in the Western Hemisphere. CLL is described as one of the "lymphoproliferative disorders". If CLL runs in your family, NCI invites you and your family to discuss joining our study, in order to help us learn more about this disease.
The purpose of the study is to:
To participate, a family must have one of the following:
Those who join the study will be asked to:
Since the genes that increase the risk of this type of familial cancer have not yet been discovered, clinical genetic testing is not part of this study. If our research finds one of these important genes, then interested individuals may be able to have formal genetic testing, either as part of this study or through an additional study.
Some participants will be offered the opportunity to visit the Clinical Center in Bethesda Maryland at no cost to them for more detailed clinical, genetic and laboratory studies aimed at finding other factors that contribute to risk among family members.
Although treatment is not a part of this study, treatment options will be discussed with participants. NCI will provide assistance in establishing care with appropriate physicians as needed. Study participants remain under the care of their primary doctors while participating in this study.
Participants and families will be asked periodically to complete a follow-up form in order to update medical and family information.
Participants are encouraged to contact the Familial CLL Team with questions or family news.
Information that would change a patient's clinical status, such as the results of routine clinical studies, will be shared with participants.
NCI is required by Federal Law not to reveal information that is collected from study participants to anyone other than persons directly involved in the study. No personal identifying information will be released or published.
Participants are asked if they would like us to send their health care providers a copy of the clinical findings (physical exam, routine blood work) from their visit to NIH.
All study related medical expenses and travel costs to the NIH Clinical Center for participants are paid by NCI.
If you are interested in more information about our Familial CLL study, please contact Stephanie Steinbart, our Cancer Genetics Referral Nurse, at 1-800-518-8474 or 301-881-1460, or email her at firstname.lastname@example.org. For information about familial CLL research, please contact Neil Caporaso.