The Urea Cycle Disorders Consortium (UCDC) consists of a team of physician scientists, neuropsychologists, nurses, genetic counselors, research staff, and patient advocates throughout the US, working together to improve the lives of people with urea cycle disorders.
The UCDC is an international collaborative Consortium with sites in United States, Canada, and Europe. The sites have significant experience in the diagnosis and treatment as well as research of urea cycle disorders and are working together to improve the lives of people with urea cycle disorders.
As urea cycle disorders are rare, the number of participants that can be enrolled is limited and thus, the conduct of clinical research studies is very challenging. The Consortium provides a way for patients to join with doctors and researchers by participating in research studies. The greater the collaboration between researchers and patients, the more we can learn about these disorders. This is an important step in understanding how these diseases impact the lives of affected individuals and discover new and improved treatments.