You (or your child) are invited to participate in the Urea Cycle Disorders Consortium (UCDC) Research Registry. The Research Registry is a research project to develop a nationwide research registry of patients with urea cycle disorders. The Research Registry is NOT the same as joining the National Urea Cycle Disorders mailing list -- please go to our NUCDF membership page to join our families and to receive the NUCDF newsletters, other mailings and benefits, and to join our online discussion groups.
How does the Research Registry Work?
Joining the Registry indicates that you are interested in learning about UCD research studies, including research to find new treatments, better markers of the disorders, and causes of the disorders. As new studies open to enrollment, if your registration information matches study criteria and it appears that you may be eligible to participate in a research study, the National Institutes of Health Rare Diseases Clinical Research Network Data and Technology Center will send you information about the studies, using the preferred method you indicated (e-mail, phone, mail, fax) so that you can initiate contact with the study coordinator directly if you are interested in participating in the study. The study coordinator will request information from you to determine your eligibility for the study and answer any questions you may have about the study. You are not obligated to participate in a research study as a result of joining the Research Registry.
Who Can Join the Research Registry?
Any patient born in the United States with a confirmed or suspected diagnosis of one of the eight Urea Cycle Disorders can register.
How Do You Join the Registry?
You can join in a number of ways:
Mail in Form: Fill out the paper form mail it to the Rare Diseases Clinical Research Network (RDCRN).
Telephone: Call NUCDF at (626)578-0833 to arrange a time to receive assistance or to walk through the registration process over the phone.
Regardless of the method you select to use to register, the information collected will be the same: your diagnosis, date of diagnosis, manner in which your diagnosis was made, date of birth, place of birth, gender, ethnicity, race, and your contact information. This information will be used only by the RDCRN to determine your possible eligibility for research studies being conducted by the Urea Cycle Disorders Consortium and to send you information about those studies and coordinator contact information. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your permission. However, you can also choose the option to share your contact information with: 1) researchers and the staff directly, 2) the National Urea Cycle Disorders Foundation.