Patients and caregivers affected by urea cycle disorders (UCDs) can apply today to join the NUCDF Partner Network, a new initiative that offers patients, caregivers, and other stakeholders a greater voice in planning the UCD research agenda.
Thanks to decades of research, most UCD patients now live longer and have more treatment options. They also face new challenges and questions. As part of the Partner Network, you will work alongside clinicians and researchers, dietitians, front-line care providers, and industry professionals to help us update the research agenda. Together, we will create and share a strategic plan for future UCD research, while building a sustainable infrastructure to carry our work forward.
Patients and caregivers can learn more and apply to join the network here. Members selected to participate will be notified in Fall 2025. All members will complete the same activities and will be compensated at the same rate.
Partner Network members will:
- Attend a virtual orientation webinar (December 2025)
- Complete five 15-minute online training modules in patient-centered outcomes research (winter 2026)
- Share your thoughts and experiences in a single 90-minute virtual focus group session (summer 2026)
- Complete a brief 10-minute survey (fall 2026)
- Provide brief feedback on a draft roadmap for future research in UCDs (spring 2027)
Network members will be paid up to $290 for full participation over the two-year project.
The NUCDF Partner Project is funded through the Eugene Washington PCORI® Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute.
