Disease-specific registries are observational studies that follow patterns in disease diagnosis, treatment and/or survival patterns over time. They are different from clinical trials in that they do not involve the study of new diagnostics or treatments for diseases. The purpose is to follow patterns of medical history, diagnostics and/or treatment in real practice settings in a large number of patients (with a specific disease) and to observe outcome and/or survival . Participation in some disease specific registries is available through a physician's office while other registries are offered directly to patients. In either case, it is important to discuss with your physician the benefit of participating and your intent to participate in a disease specific registry.
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 registries 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 registries does not represent an LLS endorsement of a particular registry, group, company or product.
This project supports the continuous tracking of a large number of patients who have been diagnosed with chronic lymphocytic leukemia (CLL) to contribute to medical research about its diagnosis, prognosis, and treatment. The data about collected about CLL is for use by patients, medical practitioners and researchers, and public and private sector decision makers. The ultimate goal is a cure for CLL. An interim goal is to help patients learn more about their disease by keeping and entering diagnostic data in the CLL PDB and by comparing their own data with a large number of other patients. A second goal is to provide medical researchers and practitioners with data useful in their search for effective treatment.
The National Children's Study 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.
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