Leukemia & Lymphoma Society - Other Disease Studies

The non-therapeutic studies on this page include studies that recruit blood cancer patients (leukemia, lymphoma, myeloma, myelodysplastic syndromes and/or myeloproliferative diseases) or relatives of patients. These studies are different from clinical trials in that they do not involve the study of new diagnostics or treatments for diseases. They are developed to gain a better understanding of patterns of disease incidence or the consequences of specific treatments for a specific disease. It is important to discuss with your physician the benefit of participating and your intent to participate in a non-therapeutic disease-specific study.

In all cases, the patient should be asked to sign a consent form that defines the purpose of the study and what is expected from the participants.

The Leukemia & Lymphoma Society (LLS) will provide links to leukemia, lymphoma and myeloma (non-therapeutic) studies that have statements of compliance with Health Insurance Portability and Accountability Act (HIPAA) regulations and that require informed consent from participants. The information provided on specific studies does not represent an LLS endorsement of a particular study, group, company, health institution or product.

This study is investigating families with two or more family members diagnosed with hematologic (blood) cancers, including Hodgkin and non-Hodgkin lymphoma, leukemia, myeloma, myelodysplasia, myelofibrosis, polycythemia vera and Waldenstrom's macroglobulinemia. The goal of the study is to determine if a genetic basis exists for these hematological malignancies. The study's principal investigator is Peter H. Wiernik, M.D., Co-founder, Cancer Research Foundation.

For more information on eligibility and what is required to participate, contact Dona Wickramsinghe, M.D., Cancer Research Foundation, Familial Hematologic Malignancy Research Project, 1327 Little Whaleneck Road, Merrick, NY 11566; (516) 665-3279, kab713@aol.com

Genetic Factors in Familial Hematologic Malignancies-Part I-Family Studies
The Hereditary Cancer Institute, Creighton University School of Medicine, Omaha NE, is offering an opportunity for participation in research to improve the understanding of hereditary cancers and the effective medical management of them. The goal of this study is to describe patterns of familial clustering of cancer occurrences. If the results of a family study show the cancer occurrences in a specific family are part of a hereditary syndrome they may be given the opportunity to have genetic testing for certain types of hereditary cancer genes as part of another study. There are no geographic restrictions for this study. People with any or all of the following will be considered for participation in the study:

The goal of this study is to identify individuals with non-Hodgkin lymphoma, Hodgkin lymphoma or CLL/SLL who also have other family members with one of these diseases. Of particular interest are families in which parents and children or brothers and sisters are both affected with lymphoma. The purpose of the study is to learn more about the genes that contribute to lymphoma by studying members of these families who are interested in participating.

Investigators affiliated with the study will use the information you provide, along with blood samples and mouth swabs, if you are willing, to conduct research to help increase understanding of the causes of lymphoma. This research study has been approved and will be monitored by the Institutional Review Board (IRB) of the Dana-Farber Cancer Institute, Boston, MA.

If you are interested and believe that your family history makes you eligible, please email Kimberly Phillips at JenniferC_Clark@DFCI.Harvard.edu

Jennifer Brown, M.D., Ph.D., principal investigator, or members of the research staff will contact you with more information about the study.

The National Children's study is a type of non-therapeutic study that is not disease-specific. It is a multi-year research study that will examine the effects of environmental influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21. The goal of the study is to improve the health and well-being of children. Participants will be recruited from 105 counties across the U.S. To learn more about the National Children's Study go to http://www.nationalchildrensstudy.gov/Pages/default.aspx