Why is Your Participation Important?
Urea Cycle Disorders Research Studies
We need you.
The continued efforts of researchers may someday save and improve the quality of life for all who are suffering from these rare diseases. Their work is one part of this important equation, the other part is you.
Through Research We Can:
Volunteers make it possible for researchers to find new treatments, create new studies, and work for the improvement of all lives effected by rare diseases.
You (or your child) are invited to participate in a research project that will develop a nation-wide registry for patients. This project is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare disorders. This network is funded by the National Institutes of Health.
By joining our contact registry, you are contributing not only to our research but to the future of all who have these rare diseases.
The reason we would like to create the Contact Registry is to inform patients and/or parents of patients in the Registry of clinical research studies performed in Urea Cycle Disorders. Joining the Registry will help researchers identify and recruit patients who are eligible for participation in future research studies, including research to find new treatments, better markers of disease, and the cause of these diseases.
Information contained within this Contact Registry will be used for recruitment in research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers aim to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients. Patients who participate in research, make it possible for researchers to understand the development of the diseases and to find new treatments. By joining our registry, you will be contributing to the research of the Rare Diseases Clinical Research Network.
Who Can Join the Contact 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 does the Contact Registry Work?
Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.
The Urea Cycle Disorders Consortium (UCDC) is a part of NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by the National Institute of Child Health and Human Development (NICHD) and the NIH Office of Rare Diseases Research (ORDR). Read Disclaimer >