International WAGR Syndrome Association - Board Member
As principal investigator for the Conference on Wilms Tumor in WAGR Syndrome, Kelly Trout conceived the project, assembled a conference team, and oversaw all aspects of the project from design through dissemination of results. Her experience with the project, supported by a Eugene Washington PCORI Engagement Award, strengthened the team’s resolve to ensure that future research efforts are also based on this model.
Trout is a registered nurse, with a background in intensive care, labor and delivery, and pediatric nursing. As a cofounder and leader of the International WAGR Syndrome Association, a patient advocacy organization for an ultra-rare disorder, she has benefited tremendously over the years from knowledge and experience shared by other rare disease organizations. She regularly shares her knowledge of PCORI and her association’s experience with patient-centered research with other rare disease organizations.
Involvement with PCORI
Served as a PCORI Merit Reviewer
Engagement Award: Conference Wilms Tumor in WAGR Syndrome -- Principal Investigator: Kelly Trout