Another type of study that blood cancer patients and their relatives can participate in is a nontherapeutic study. Nontherapeutic studies aren't considered clinical trials because they don't involve the study of new diagnostics or treatments for diseases. Instead, they're developed to gain a better understanding of disease-incidence patterns or the consequences of specific treatments for a specific disease.
In all cases, you should be asked to sign a consent form that defines the study's purpose and what's expected from the participants.
If you'd like to consider taking part in a nontherapeutic disease-specific study, talk with your doctor about the benefits of participating.
The Leukemia & Lymphoma Society (LLS) and The Leukemia & Lymphoma Society of Canada (LLSC) provide a list of nontherapeutic 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 doesn't represent an LLS endorsement of a particular study, group, company, health institution or product. Visit the Disease Registries page to access disease registries and nontherapeutic studies.
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.
LLSC provides information about Disease 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 LLSC endorsement of a particular registry, group, company or product.