Notre Dame Rare Project Network Spring 2026 Team
Notre Dame Patient Advocacy Education & Outreach Student Team
In Spring 2026, the CSNK2A1 Foundation partnered with students from the University of Notre Dame’s Patient Advocacy Education & Outreach program on an OCNDS trial-readiness project focused on clinical outcome measures and endpoints. The student team reviewed clinical trials across related neurodevelopmental disorders to identify outcome measures that may be feasible, meaningful, and adaptable for future OCNDS research and clinical trials.
Their work supported the Foundation’s efforts to better understand how symptoms such as communication, behavior, sleep, daily functioning, and quality of life are measured in research, with attention to feasibility, floor effects, and relevance to families. We are grateful to the full student team for their thoughtful contributions, and especially to student leaders Katie Burke and Julienne Angtuaco for helping coordinate and guide the project.
Some of the team will be continuing their work with the foundation through the Summer!