Andrea Nederveld

Courtney Berrios is a board-certified genetic counselor trained in patient-centered counseling theory, and a researcher focused on psychosocial outcomes in patients. In her early career she spent many years as a patient and family liaison for a genetic study of a rare disease, Hirschsprung’s disease. This provided valuable experience in genomic research and the interface of genomics researchers with study participants. As she discussed genetics and research with study participants, developed patient-facing materials, disseminated study findings to participants through a study newsletter and website, and returned individual research results, Courtney developed a desire to focus more on patient and research participant perspectives. She has transitioned to a focus on studies of psychosocial, behavioral, and ethical aspects of genetic research and life with genetic disease, with a goal of making genomics research and medicine more patient-centered. Courtney has previously partnered with patients and patient advocacy groups in research recruitment and developing surveys and has participated as a stakeholder in a PCORI-funded project engaging stakeholders to identify patient-centered outcomes linked to genomics in autism. She has published on patient engagement in genomics research and presented at the National Society of Genetic Counselors Annual Meeting in a session on patient-reported outcome measures. In her current work, Courtney recognizes the need for even greater engagement and broader representation of patients and families in our research. Courtney is motivated to learn from others about successful engagement efforts and to share information about PCORI's mission and funding opportunities with others.

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Stakeholder Types
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

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