Chronic Lymphocytic Leukemia (CLL)

CLL is a disease of the blood. The American Cancer Society estimates that 7,300 new cases will be diagnosed with CLL in the United States each year. An estimated 2,000 of these cases will eventually die from their disease.

About the study

CLL begins in the bone marrow and involves the uncontrolled growth of white blood cells. Since there is evidence that these cancers cluster in families, this study aims to understand how genetics and environmental exposures contribute to the development of these cancers.

Who is eligible?

You may be eligible if two or more members of your family has CLL. We are identifying CLL patients through University of Minnesota oncology patient records.

Who is funding this study?

This study is funded by the National Cancer Institute.

What is involved in the study?

As a study participant you will be asked to:

• Answer questions about your health and family history of cancer. A questionnaire will be mailed to you. You can answer the questions by filling out the questionnaire and returning it in a postage paid envelope, or you can answer the questions on the telephone.
• Donate approximately 2 tablespoons of blood. This can be done during a visit to the University of Minnesota or by taking a kit that we mail to you to your local physician.
• Donate a sample of cheek cells by swishing about mouthwash inside of your mouth and then depositing it into a container. A kit will be mailed to you containing all necessary items to collect the sample and return it to the University of Minnesota.

In addition, if you have had medical care for CLL, we may ask for your written consent to obtain medical records related to that care.

The Mayo Clinic in Rochester, Minnesota and the National Cancer Institute in Bethesda, Maryland are our research partners. Any samples or information we obtain from you will be sent to these institutions identified only by a number and your initials. The Mayo Clinic and the National Cancer Institute will not be able to trace your samples or information back to you.

What are the costs of participation?

There are no monetary costs for participating in this study. Some of your time, however, will be spent completing a questionnaire and providing samples of your blood and cheek cells. You may send your bill for blood collection for this study to the University of Minnesota so that you will not be charged. If you choose not to participate, it will not affect your present or future medical care and treatment at the University of Minnesota.

What about my privacy?

Research test results are confidential and are not part of your medical history while being used for research purposes. The blood or cheek cells obtained from you will be used to determine if there is a genetic contribution to the increased risk of CLL or related conditions your family. So little is known about the factors we are studying that the results will not provide information useful to your family. This information is for research purposes only and you will not be informed of the results. However, if you wish, you will be informed of the overall findings from the study once the study has been completed. You will not be identified in any publication or reports of this data.

Whom can I contact?

Lead investigator:
Logan G. Spector, Ph.D.
612-624-3912
866-256-4125

Co-investigators:
Dale Hammerschmidt, M.D.
Vicki Morrison, M.D.

Study nurse:
Jane Gau, R.N.
612-625-9125

Study coordinator:
Phyllis Balto
612-626-3905
866-256-4125

Address:
CLL Family Study
420 Delaware Street S.E., MMC 715
Minneapolis, MN 55455

Out-of-study-contact*:
University of Minnesota Medical Center
Fairview-Riverside Campus
Hospital Patient Relations
B356 Mayo Memorial Building
420 Delaware Street S.E.
Minneapolis, MN 55455
612-273-5050

*If you would like to speak with someone not involved with the study