Courtney Berrios
Children's Mercy Research Institute - Staff Member

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.
Involvement with PCORI
Engagement Awards: Engaging Stakeholders to Identify Shared Research Priorities for Rare Diseases in Children - Principal Investigator (PI)
Engagement Awards: Incorporating Genetics into Patient-Centered Outcomes Research: An Engagement Model for the Autism Research Community - Advisory Panel member
Ambassador Interests
- Prioritizing and/or refining the research topic or agenda
- Results Review/Analysis
- Prioritizing and/or refining research questions
- Data Collection
- Participant Recruitment/Retention
- Dissemination
- Determining the research outcomes that will be measured
- Determining the intervention(s) provided to research subjects
- Designing research study methods