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Another type of study you can participate in is a disease-specific registry. Disease-specific registries are not clinical trials. Instead, they are observational studies that follow patterns in disease diagnosis, treatment and/or survival patterns over time. Unlike clinical trials, they don't involve the study of new diagnostics or treatments for diseases. 

Disease registries follow patterns of medical history, diagnostics and/or treatment in real practice settings in a large number of patients (with a specific disease) and observe outcome and/or survival. Participation in some disease specific registries is available through a doctor's office while other registries are offered directly to patients. In either case, it's important to discuss with your doctor the benefits of participating and your intent to participate in a disease-specific registry. 

In all cases, you 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) provides 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.

last updated on Tuesday, March 15, 2011

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