Join the RDCRN Contact Registry for Urea Cycle Disorders
Thank you for your interest in the Contact Registry. This Contact Registry allows individuals with urea cycle disorders to register themselves to receive information about studies conducted by UCDC, a member of the Rare Diseases Clinical Research Network (RDCRN).
By joining the Contact Registry, you will be asked to provide information about you (or your child) and how you can be contacted. The RDCRN will use that information in two ways:
This informaton is collected by the RDCRN Data Management and Coordinating Center and is not shared with anyone without your expressed permission.
You will be given the option to share the information you enter into the RDCRN Contact Registry directly with UCDC study doctors and research staff.
How do I Join?
Register by mail or fax (.pdf)
Frequently Asked Questions about the RDCRN Contact Registry
What are the benefits of joining the Contact Registry?
Who Can Join the Contact Registry?
Is my information kept private?
Update Your Information
If you are currently a member of the Contact Registry and would like to update your contact information, or discontinue enrollment click below:
*Note: you will need your User ID and Key to login
The Urea Cycle Disorders Consortium (UCDC) is a part of the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS). Funding and/or programmatic support for this project has been provided by the National Institute of Child Health and Human Development (NICHD) and the ORDR, NCATS. Read Disclaimer >