Medical management or liver transplant for urea cycle disorders: The family experience
App can be dowloaded using the QR codes at the bottom of the page.
NUCDF is proud to announce the launch of a new app to inform the UCD community—families and providers—about the results of the Liver Transplant vs. Medical Management for Urea Cycle Disorders study. This study, proposed by the NUCDF and UCD providers, gathered information from the largest group of UCD families and providers about how the decision was made to transplant or continue standard UCD treatment of diet and medication. As part of the UCD community, you may have participated in this study. If so, we thank you again for making this knowledge possible to share with others! In addition, you may have seen or read the study results booklet that the NUCDF published and distributed at our last in-person NUCDF conference.
The UCD Research app is a novel method developed by the study team to disseminate the study results—that is, to "get the word out"—to the UCD community easily and quickly in a portable, user-friendly way. It is also a study to measure the app's effectiveness as a learning tool. The app consists of three approximately ten-minute modules. You will be asked a few questions before and after each module. You do not have to complete the modules all at once, as you may stop and restart where you left off. Of course, your responses will be anonymous, and your identity protected.
If you are interested in downloading and completing the new UCD Research app, or if you have any questions, don't hesitate to get in touch with the NUCDF Study Coordinator, Jan Bartos
