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Waldenström's Macroglobulinemia Study

Waldenström's macroglobulinemia (WM) is a rare type of tumor that belongs to a group of disorders called lymphoproliferative diseases. It occurs in approximately 1100 people/year in the U.S. Although WM can occur in people of both sexes and any race, the majority of patients are white males. The cause of WM is unknown. The National Cancer Institute (NCI) of the National Institutes of Health (NIH) is conducting a study to obtain clinical information about WM and to determine what causes WM to sometimes develop in two or more family members.

Definition of Familial WM

Most people who have WM are the only member of their family with this condition. Sometimes, however, WM occurs in two or more blood relatives; the affected family members are said to have familial WM. The reasons why WM may run in families are unknown. It might be that the affected family members shared a susceptibility to WM, or they may have been exposed to similar environmental factors. At the present time, little is known about either host factors or environmental exposures that might be associated with WM. We want to study families in which two or more blood relatives have developed WM because they might provide important clues about what causes WM in the general population.

Our Study

We are especially interested in persons from families with 2 or more members affected with WM. Persons who were diagnosed with WM at an early age (less than 35 years old) are of interest to us even if no one else in their family has WM.

If you participate in our study, we would ask you to:

  • Complete a questionnaire that asks about your family's structure and medical history and about certain factors that may be important in causing WM.
  • Give us permission to obtain medical records documenting cancer diagnosis in the affected family members.
  • Allow us to obtain blood and/or saliva samples from both affected and unaffected family members for a variety of laboratory studies.

Some study participants may be invited to the NIH for clinical and other studies. All information obtained from our study would remain confidential to the extent permitted by law, and participation in any part of it is voluntary.

If you are interested in more information about the study, please contact the research team by phone at 800-518-8474 or by email at

For more general information about WM, contact Dr. Douglas Stewart.

Clinical Genetics Branch - Research Areas