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Patient-Centered and Real World Research

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Much of the research to date has been conducted at large academic institutions and cancer centers. Not all patients have access to these centers. Less is known about patient care and outcomes at smaller facilities, in rural settings, and in private practices, despite the fact that most people receive care in these settings.

People who wish to participate in research are often excluded if they do not have access to large academic institutions. Patient-Centered Outcomes Researcher Institute (PCORI) prioritizes data collection of patients who receive care in these real world settings. Our ABOUT Patient-Powered Research Network allows anyone who is affected by hereditary cancer to participate in the research process regardless of where they live and where they received their care (read our article on ABOUT).

 

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