The Urea Cycle Disorder International Patient Registry empowers every UCD patient and family around the world to make a difference in the fight to conquer UCD. By participating in the Registry and completing your profile survey about your own unique experience with UCD, you are contributing to a global database about the prevalence of UCD subtypes, the accessibility of diagnosis, care and treatments, and how UCDs affect patients. The information you enter is anonymized and pooled with the anonymized data from other participants to create a centralized resource that is vital to helping researchers learn more about UCDs, accelerating the development of new research and treatments, identifying issues that need research, and improving the care of all those with UCD.
Every person counts in the fight against UCD. As a participant in the Registry, you will be able to explore data and view how your answers may compare to others. You will also have access to information about new research for UCD and ways to participate in studies and clinical trials. By logging into your private, confidential and secure profile, you can review the results of published and unpublished studies that result from the Registry.
The UCD Registry recognizes the importance of global collaboration. One of the goals of the Registry is to enable researchers from around the world to work together to speed research progress. The Registry connects all those interested in accelerating UCD research -- patients, families and researchers -- with a resource that has never before been available in one place.